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 Recently Diagnosed with IIH 34yrs male from India.

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yashwinder Insan
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PostSubject: Recently Diagnosed with IIH 34yrs male from India.    Tue Sep 17, 2013 11:44 am

Dear Forum Members

I am Yashwinder, 34years old male from New Delhi, India. 

I experienced some vision issues in my right eye when position change, a cloud formation which disappears within less than 10 seconds it was in 2012, I went to eye hospital, doctor checked pressure etc and wrongly diagnosed that its due to weakness. 

Lately in 2012 during winters symptoms gone off ( i guess remission phase)


2013 April onwards I started feeling a lot of fatigue, my head starts boiling in evening, eventually goes to bed very early thinking its work pressure. later in Month of July I started aerobics, and suddenly the symptoms gets worse with my eye. 

In August 13 the Right eye the vision while changing the position was tunnel view, (with complete black covering and disintegrates within less than 10 seconds)and with this I went to Eye specialist, who said its problem with brain. CT scan came normal, he further said its Pseudo Tumor and gave me Steroids 40mg Predenisolone ....which i continued for a week, after a week he said papilloedema in left eye is reduced but right eye (eye with symptoms) not much change ....though those tunnel view symptoms gone with medicine. He continued steroids for another week. 

I took second opinion, and this eye specialist referred me to neuro expert. 

Neuro took all long sessions and after  MRI , MRV, few other tests, last told Lumbar puncture. which I underwent on 6th Sept 2013. Thus confirmed its IIH pressure is higher side 54 (i guess not sure)

He further said he is putting me on Diamox 750mg (per day) and everyweek I have to come for eye checkup to see condition of papilloedema. He said mostly its controlled by Diamox (if it works) rest steroids is another option. He briefly explained Shunt surgery but said its too early to discuss it, hopefully medicine will control it. 

at present I am on diamox since 5th Sept 2013 (today is 16th Spet 2013), I feel slight pain in head ( it was never earlier) last week I went for checkup, he said marginal change (though he wasnt sure) in papilloedema. 

I never had any severe headaches, but after lumbar and say last 1, 2months have this heavy head feeling, slight pain kind of feeling. 

This is all about my story so far with IIH, Its good be part of this forum, as in India, per say awareness and understanding of the concerns is still a challenge. 

Hoping to hear some useful info from members.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Tue Sep 17, 2013 11:48 am

Oh forgot to mention in September itself a new symptom came that is constant sound in left ear. it was irritating earlier but now i am getting used to it. Doctor said its because of pressure. Lumbar helped for 3-4 days but during those days dominated by low pressure headaches (post lumbar)
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Tue Sep 17, 2013 3:31 pm

Hi and welcome to the group! It does sound like your symptoms are consistent w/ IIH..not everyone gets headaches. In fact I think you'll find that everyone responds differently to IIH and treatments. That's one of the reasons IIH is so difficult to treat.

I'm gald you're getting treatment and they're monitoring you closely. Please look at information on the site and let us know if you have any questions/concerns. I recommend starting with the Useful Guides and Print Outs section.

Take care,
Julie
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Tue Sep 17, 2013 5:23 pm

Hello Yashwinder and a very warm welcome to the Group Forums. You seem to have as Julie said the typical symptoms. Does the sound in your ear sound like whooshing or a heartbeat type sound? If it does that is called Pulsatile Tinnitus which is one of the symptoms with IIH. It's caused by the pressure, the reason it happens, is because high intracranial pressure causes the compression of blood vessels. It can accompany the headaches, or just present on its own. Also Diamox can cause tinnitus which is a ringing like noise.

Diamox is also a diuretic so you might be going to the toilet more often, and this means that you also need to keep up with your fluids because dehydration can cause headaches, especially if your in a hot climate. I'm not saying that's what is causing your persistent headache, but it's something to be aware of.

I wonder if your CSF has shot up again after your lumbar puncture. It does replenish itself quite quickly, so there is a chance it could be raised again.  Keep a [You must be registered and logged in to see this link.] to record your symptoms, which you will then be able to show your doctor, and clarify what you're telling him.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Sep 18, 2013 3:20 am

Hello Yashwinder and welcome.
As you may have noticed, there are many more women than men diagnosed with IIH.  Often, the cause is never found, and so the doctors just try to treat the symptoms.  Diamox is the most common medication used.  Steroids, in high doses, are sometimes used when necessary, but those side effects are much more serious.  Diamox can cause uncomfortable side effects, especially the tingling of hands and feet.  If you get these, try to ignore it.  It will get easier to deal with.
And yes, 54 is considered "high".  In fact, most medical literature will tell you that anything over 25 is considered high.  750 mg of Diamox is not a very high dose.  If you do not get relief on that dose your docs will probably increase it.  If you start feeling nauseated after taking the Diamox, there are meds that can help with that.  I used to use Zofran until I was able to get used to the Diamox.

Looking forward to hearing more from you.
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yashwinder Insan
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Sep 18, 2013 5:18 am

Dear All 


Thanks for your valuable replies! 

I have following symptoms:

Pre Lumbar:

1. Heavyness in head in morning. 
2. in evening sometimes head starts boiling , with no fever (but very uneasy feeling)
3. Fatigue 
4. tunnel view symptoms: Intrestingly these symptoms i noticed first time in May 2012, at that time the tunnel was light grey in colour .... as shared local eye doctor could not identify the cause. 
Later in August 2012 episodes of symptoms lowered and towards start of winter say Nov, till March 2013 there were no symptoms of tunnel view in eye. (i noticed that symptoms appear when I start aerobics (running, cycling etc)

5. Recently this year I started aerobics as I put on weight again I am 182Cms and around 98kgs. The symptoms appeared very strong. The tunnel view which was grey earlier was complete black with a slight tunnel view in center. I also noticed fatigue, heavy head sometimes with slight pain on movement. 
6. EAR sound: This is constant whooping sound ....'teeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee' somewhat like this.......(difficult to explain in words) this started in Sept 13 itself. 
7. Sometimes noticed right side numbness of hand and leg for short duration. 

Post Lumbar: 6Sept 2013

1. After lumbar that ear sound gone....but exactly after 5 days it started and still continuing. 
2. I was down with spinal headaches for 4 days, which is perfect now
3. I feel heavyhead, and slight pain on movement of head, or while coughing etc. This is also not always eg. Monday it was, yesterday It was very very less and today I can say moderate. 
4. That tunnel view symptoms have gone with Steriods (which are prescribed by eye doctor earlier) though my Neuro tapered and stopped it now. 

Diamox: 250 Mg three times a day....

Side effects: 
1. Slight tingling in feet only 3-4 times a day 
2. Initial 3-5days acidity, which I take chilled water and milk, so now its normal, along with Pentaprazole capsule in morning  and avoiding any fried spicy food. 
3. I am on low Sodium/ salt diet 

Tomorrow have appointment with ophthalmologist, she will examine the funds thus will let me know, Diamox is working or not? On 20th I have appointment with Neuro, I will request him, also to increase dosage, as i am able to take it as of now. 

Once again thanks guys for your support and quick replies.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Sep 18, 2013 5:43 am

It sounds like you did get low pressure symptoms after the lp, and as your pressure was rising, the high pressure symptoms starting coming back.  That is very "normal."
What I used to do, was immediately after having a lp I would start back on my Diamox.  I mean, just as soon as they wheeled me into recovery and brought me something to drink, I took my meds.  It seems to help to keep the pressure down, longer.  BTW, I hope they brought your pressure down considerably during your lp.  Any idea what your closing pressure was?  I highly recommend keeping a daily log of all the info that may affect your case:  how you feel, what meds you take, what activities you did, what tests you have done, what docs you have spoken with, what the weather is that day.  Perhaps you will be able to determine if there is a trigger, but, it may just be an unknown cause.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Sep 18, 2013 6:20 am

Yes, I had spinal headache due to low pressure after lumbar and recovered fully after day 5.

As of now i feel its high pressure, today seems day is getting bad, as morning was fine, but now i started feeling heavy head and slight headache on movement, moreover un easyness feeling. Ear sound is also on.

I have been on Diamox since 5th of Sept 2013, could you please let me know, how much time it takes generally to show some relief or its functioning?
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Sep 18, 2013 4:42 pm

Hello, Yashwinder,

Welcome to the forum. I am sorry you have to be here, but glad you found it.

As a male with PTC, I can identify with your description. I think symptoms in males develop differently than they do in females. Like you, I did not present with a headache; it was with the lumbar puncture that headache symptoms started becoming more prominent. My OP was 36. Make a note of eye stiffness/pain. If you do not currently have that asw a symptom, be aware of if and when it shows up. I wonder if Diamox has something to do with that one. Also, do you have any pressure/pain in your ears? My symptoms started in my right eye, followed by ringing in my right ear. I have a lot of crazy visual problems, including grainy vision, sparkles, floaters...


Now I am going to ask you my standard questions. What is your testosterone level? Mine, as is the case with almost all males I have talked to with IIH, is low. Also, were you on any medications within a couple of months of being diagnosed? Especially antibiotics, accutane.

Again, feel free to ask questions.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Wed Sep 18, 2013 7:43 pm

I would also mention that I had an episode of symptoms when I started an exercise program a few years ago. People with IIH can have an exercise intolerance, so it's something to watch. Any kind of strain can bring on symptoms..coughing, sneezing, lifting, bending, etc. Low impact cardio was recommended..I can basically walk or ride a stationary bike, but still get a headache with increased activity. A symptom log will help you identify triggers and changes.

Unfortunately, everyone seems to respond differently to Diamox. The first time I took it I didn't have any problems. The second episode was awful. I never adjusted to side effects and it didn't control my symptoms at all. I have found that my pharmacist has a lot more accurate information regarding medications, so I would talk to them or physician with any questions or concerns regarding the Diamox.

Hopefully you'll get a lot more information at your upcoming appointments and adjust to treatments soon!

Keep us posted and take care,
Julie
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Thu Sep 19, 2013 1:04 am

Diamox is not one of those meds that require taking for a bit for it to build up to start to work.  In fact, it is very important that you take the Diamox about the same time every day..  If they are not the ER (extended release) caps, then the effect only lasts 8-10 hours.  Are you taking a 250mg tab every 8 hours?  That's the best way to take it.
Glad you stopped by, Mark.  I hope that your experience with PTC/IIH will be helpful for Yashwinder.  As you said, this disease does tend to be a bit different for you guys than us gals.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Thu Sep 19, 2013 4:39 am

Mark Thanks for your support, I am glad to have you all on this forum! 

Regarding symptoms, I never had headaches (extreme ones) but mild sometimes, however right eye is worst affected by Papillioedema (same eye showed tunnel view symptoms in August). 

Last I tested 5years ago testosterone level was normal, now I guess I need  to check. Today have appointment with ophthalmologist, lets see what comes out!

I was never on any vitamins, antibiotics drugs Smile 

Interestingly Mark, these right eye tunnel view came last year for 2-4 months than disappeared itself...... I am not sure I was 98kgs when started aerobics last year, symptoms came with less intensity, than in 5 months I went to 89kgs and than in winters no symptoms in right eye, though fatigue etc was there. 

now again I am on 98kgs and this time with aerobics symptoms came but intensity is increased. 

This sound in ear I have in left ear, started experiencing it in Sept 2nd onwards than lumbar on 6th Sept..........there was a gap no sound, again I guess on 11th Sept again it started and still on :(
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Thu Sep 19, 2013 4:42 am

Thanks Julie & Wylee 

I am on Diamox for little than 2 weeks now, and I hope it should show some positive results today. I will post more once through with my eye examination. 

Once again big Thanks for your support!
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Thu Sep 19, 2013 9:51 am

Back from ophthalmologist.... she said no change in papilloedema in right eye, she further said that I am on Diamox since last two weeks so its too early to predict, she further called me after two weeks to examine  and she suggested to do perimetery test  (vision loss). 

Tomorrow have appointment with my Neuro, shall I ask him to increase the dosage as I am able to take it. As of no side affects except tingling in feet thats too for less than a minute and 3-4 times in a day. 

Frankly I am bit disappointed and feeling low on papilloedema in right eye didnt improve at all :(
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Thu Sep 19, 2013 6:52 pm

Don't worry too much yet. Diamox takes some time to kick in. It is worth asking your neuro about, but you should definitely have the field of vision test to make sure you are not losing your sight. just some food for thought, the side effects of Diamox increase with the dosage so be prepared for a headache or increase in tingling, etc.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Fri Sep 20, 2013 4:43 am

Mark 

Thanks for clearing the confusion, I was under impression like any pain killer Diamox will do wonders in days :( lets see... 

At present I dont have any headache, slight heavyness in head, which has not changed since last of August, vision wise, strangely the sound in ear is still on, and yesterday i felt a strange thing......papilloedmea is in right eye and it has not changed but I feel slight low vision in left eye, whcih has no papilloedema. it was there yesterday but today morning slight improvement. . . . dont know what is going wrong. 

I have appointment with neuro today at 12noon. Will update you guys about latest, meanwhile going for perimetry test.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Fri Sep 20, 2013 5:35 am

hi Yashwinder;
Diamox is not a painkiller.  it is a carbonic anhydrase inhibitor and causes an acidosis in the body, and reduces cerebrospinal fluid (CSF) production.  most people have awful side effects from it and I got very sedated.  if you are not having these side effects, more power to you!  in that case I would think it would make sense to increase your dose if your neuro agrees.

I think most of us here have ringing in the ears.  I have it regardless of how I feel.  I am actually much better after jaw surgery and have only rare symptoms compared to before.
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there are several interesting papers on PubMed on IIH in men, see the ones by Fraser et al, Bruce et al, and also by Lee et al.  I have the PDFs if you want them.

also if you haven't taken a look at ihrfoundation.org, that is a good resource.  esp. this page:
[You must be registered and logged in to see this link.] see #9.  you can have visual loss even without papilledema.

so sorry you have this awful condition with us.  but we are always here to commiserate and help out.
Deb
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Fri Sep 20, 2013 8:20 am

Dear Deb

Thanks for such a valuable post. 

Guys I am back from perimetry test (for vision loss) it came perfect in both the eyes irrespective of papilloedema in right eye. Sitting at Apollo hospital, my Neuro will meet at 2.30pm. 

I will defiantly ask him, to increase dosage or combo (lasik or topamide) bit feeling shy on second option, as he may feel I am directing him... but for increase in dosage i will request him. 

Guys I feel better when on IhaveIIH, its a biggest online support and resource specially for people like us from developing nations.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Fri Sep 20, 2013 1:41 pm

Guys I am back from Neuro, bit disappointing he continued with 750mg Diamox and told its maximum dosage i can have. Papilloedema no change, to which he said continue diaomx for 2 weeks and if no improvement, they will put me on steroids :(

Not really sure, treatment is going in right direction or not?
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Fri Sep 20, 2013 11:01 pm

Lasix is known to act synergistically with Diamox, not sure why you couldn't ask to try this before steroids.  certainly if your visual fields are OK.   now, I love steroids.  everything is normal on steroids and I feel great.  and I've never had papilledema.  I wouldn't hesitate to take a short course of them, maybe no more than 3 weeks.  but long term the side effects are too much.  it's not a good long term option.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Mon Sep 23, 2013 11:20 pm

Deb's right on the side effects of steroids.  They can be brutal on the body.  I wonder if your Neurologist isn't keeping up with the newest info when it comes to IIH.  The Diamox dose of 750/day is actually low. And I  take both Diamox and Lasix, which does seem to work better for me than either one alone.  Is there another Neurologist available that you may be able to get a second opinion?  There are so many other meds you could try, I for one did a bunch before we decided on the lp shunt.  High dose steroids may offer great results, especially for severe headaches, which you don't have.  Low dose steroids, not so much.
So glad that you found our website.  It is here to help educate everyone, as well as offer support.  Feel free to ask any questions, we will do what we can to help find the answers!
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Thu Sep 26, 2013 11:58 am

Thanks guys. I was not well for 3 days hence could not access forum. 

I am on 1250mg Diamox now, but again no change in symptoms, I am visiting another neuro and lets see if he suggests Diamox + Lasix Combo, and if it works on me.

Rest,  these days I feel, sometimes almost near to normal than during day fluctuations, like now i feel pressure behind my right eye and right side of head. The sound in ear is ongoing, I agree before lumbar and any medicines It started (but episodic) than i went for lumbar and after 5 day of silence it again started, and now i am living with it :( Regarding Sleep disorder tests I am waiting for my salary to come as test is costing too 20000INR and with last two months I am ended up spending most :( (strangely medical insurances doesnt cover such tests under it)



My first Neuro is keen to put me on steroids from first week of October.  

Want to try every possible way before that.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Sun Sep 29, 2013 10:18 am

Hello Friends

Finally Moved for second opinion to another Neuro, he felt strange and shared that in his carrier of 8 years I am first physically Fit Male Patient who have this disorder. Anyways he explained he will try to control pressure as far as possible by medicines and told clearly that (origional dosage) 750 mg Diamox a day for me will never work. He puts me on 2000mg Diamox a day (500mg four times) He mentioned that 2g diamox actually affects production of CSF in body. He suggested Perimetery after every two weeks, and clearly told until vision is fine there is no need to think about surgery. HE gave option if in case some thing happens with vision than have to under go LP shunt and explained it nicely (usually as docs explain its simple procedure blah blah :()

Lets see if Diamox 2Gram work on me, I am feeling very acidic, sleepy, and tingling is luckily slightly increased. I requested him for sleep apena but he ruled out...:(

Atleast I am saved from taking Steroids as suggested by previous Neuro Smile
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Sun Sep 29, 2013 5:48 pm

I am not sure how the neuro ruled out sleep apnea without a sleep study.  I am concerned because as he said you are a physically fit male with no other risk factors.  my son and I had 4 sleep studies between us at 3 different sleep labs in Las Vegas that were "negative".  we were diagnosed at Stanford.  it is not an easy thing to diagnose and it can be subtle.  I have had multiple docs blow off my concerns and tell me that there is nothing wrong with my airway, nothing wrong with my sleep study, then after I got diagnosed and after I had tongue surgery but was still having sleep apnea, had my sleep surgeon who is an expert in this area tell me he thought that jaw surgery was a ridiculous idea for me.  funny thing, I'm 95% better after jaw surgery!  my IIH is better, importantly.

the lesson here is trust your intuition, keep asking questions, get a third fourth and fifth opinion if you need to.  perhaps a sleep medicine doc is in order.
in the US, they use the Epworth Sleepiness Scale to determine risk for OSA:
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if you test high you can bring the results in and ask them to think again.

if not, I have other questionnaires that can detect risk for sleep disordered breathing that are based on more than just sleepiness.  I think looking at sleepiness is helpful only for the worst cases.  email me if you want those questionnaires.  it's unlikely that the docs in India are aware of those.  they come from a book by Dr. Barry Krakow, Sound Sleep Sound Mind.  he has done some brilliant research on sleep disordered breathing in insomnia and PTSD.

Deb
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Sun Nov 03, 2013 3:18 pm

Hi Members

Gretings!

Few updates on my situation:

1. Papilloedema started reducing opthemologist told its been reduced by 40% (ahhhhhh big relief Diamox 2000mg seems showing magic)
2. Tinnitus is still there, but sharpness and loudness is reduced, its more or less like air sound after landing at the airport.
3. Usual symptoms comes and go, but intensity reduced greatly Smile
4. Empty Stella Syndrome: Caused my Thyriod and Testosterone to touch minimum levels, I guess It will go up once pressure eases.

Diamox : Tolerance so far seem okay for me, apart from tingling nothing else much, NS told to reduce weight ASAP.

I started little worried getting about other side effects of Diamox, major is Aplastic Anemia?

Didnt find much info, can anyone please guide on it?
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Sun Nov 03, 2013 5:10 pm

Great report Yashwinder.  I hope that you continue to get good results using just the meds and will not have to even consider any type of surgery.

Because Diamox is a diuretic, it can flush the body of much needed minerals.  My docs check my blood electrolytes every 3 to 4 months, checking to make sure the levels are "normal."  I do take a prescribed dose of potassium which does keep that at a good level.  Eating foods rich in potassium, like bananas and some veggies can help too.

Here is a link to Lab Tests Online, which is a really good source of info:

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It explains the electrolyte panel test.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Tue Nov 05, 2013 4:06 pm

I would check IIH and Medication section for side effects. Many members have posted information regarding issues and successes. It's important to remember that everyone responds differently. I would suggest keeping a symptom log to help you keep track of any changes. It gives the doctors more information too.
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Sat Nov 30, 2013 2:48 pm

I am back, after a long break, symptoms (usual IIH) are much improved with Diamox 2000mg. Pap is almost 50% reduced in right eye (severely affected) and left eye no pap Smile


My Neuro, cut my dose to 1000mg in a day today, just wondering and skeptical too, if the symptoms come back :(

Not sure what to do, Neuro said 2000mg he cannot allow to continue for long time, but i guess weaning  started in advance !
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Mon Dec 02, 2013 8:51 pm

I'm glad to hear you've had improvement! You can always call the doctor if you notice changes in your symptoms, but hopefully the maintenance dose will work for you..good luck!!
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PostSubject: Re: Recently Diagnosed with IIH 34yrs male from India.    Mon Dec 02, 2013 11:42 pm

Yashwinder, I tried to use google to see what is recommended on long term use of Diamox, especially since I have been on it since Aug 2010.  It seems that the reason given for not using it as a long term alternative is only because it has a tendency to require the use of dose increases in order to maintain the same level of relief.  I have heard of that myself.  I know a few people who have had to keep increasing their daily dose in order to keep the symptoms at bay.  It is NOT medically unsafe to keep taking it, even at the higher doses.  The important thing to do, is to have your blood checked regularly, many times a year, to make sure that you are not becoming deficient in anything due to using Diamox.  I would highly recommend doing some research yourself and even making copies to bring to your doctor, in case your symptoms do start to come back, which is a very real possibility.  
Hope you are keeping a daily log of any and all changes you are going through.  Most of all I wish you good luck and just maybe you will be able to cut back on your dose and not be affected.
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