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 I can't breathe!!!

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mcleod80
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PostSubject: I can't breathe!!!   Mon Aug 20, 2012 4:12 pm


I just wanted to know if anyone out there is experiencing the same symptoms as me, or should I be worried?
I was put on Diamox 6 weeks ago after my initial diagnosis. I take 250mg twice a day, so only a small dose.
The thing is, I've noticed for the past few weeks that I'm getting increasingly more breathless. It's now got to the point that I have to take a rest if I'm changing the bed sheets! It's almost as if there's not enough oxygen in the room and i have to keep taking big deep breaths.
I used to be able to do a solid 45 minute cardio session at the gym, now carrying my 21 month old son up the stairs leaves me struggling to breathe.
I really hope you all come back and tell me this is normal, coz if it's not then I must be dying of lung cancer.

Kerry.
:ill
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Heidi
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PostSubject: Re: I can't breathe!!!   Mon Aug 20, 2012 9:43 pm

Hi Kerry hug It could be a side effect from the Diamox. Diamox can cause extreme tiredness and fatigue. If you've only been experiencing this since taking the Diamox I would have a word with your GP or get in touch with your Neurologist about it so that they can decide whether your medication needs adjusting or changing. Please let us know how you get on.

Heidi for you
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Wylee
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PostSubject: Re: I can't breathe!!!   Tue Aug 21, 2012 12:03 am

I was on a different diuretic and had the same issue. It ended up being an allergic reaction, so I highly recommend that you ask your doctor ASAP, or you may even ask your pharmacist.

There are many other meds to try if your doctor does pull you off the diamox, so not to worry.
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VDubs
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PostSubject: Re: I can't breathe!!!   Fri Aug 24, 2012 12:53 pm

hope your starting to feel better
i get out of breath but i thort it was cos i was fat

sorry im not much help


Dyslexic & Special

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mcleod80
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PostSubject: Re: I can't breathe!!!   Fri Aug 24, 2012 4:01 pm


thank you Everyone who replied to my post.
Just thought i'd give you all a quick update..........After 5 full days of chasing the neurology department I finally managed to speak to a registra on the neurology ward at the local hospital. At first he was rather dismissive and told me that the breathlessness definitaly wasn't a side effect of the Diamox and he'd never come across anyone who experiencd that as a symptom. He then told me to just keep taking the diamox and I could discuss it with my consultant at my out patient appointment on 1st October.

Now I don't know about you, but being unable to breathe properly for the next 5-6 weeks isn't an appealing prospect! So I did some internet tesearch, and lo and behold I found something rather interesting. I'll paraphrase for you what I discovered:
In march of this year a report was submitted to the FDA showing that in over 2000 people who were taking Diamox, "7.8%" of them suffered from breathlessness as a result. Interestingly, after 6 months of treatment this number dropped to 0%. HA! In your face Mr Doctor!!!

So I called and called and called and managed to speak to the Registra again. I quoted to him the information i had found and this time he took me seriously. He suggested i stop taking the Diamox and see if the breathlessness went away.......I did....and it did.
WONDERFUL!!! I could breathe! This elation lasted 2 whole days until I woke up this morning at 3am with THE headache, stiff neck and whoosing noise. Words can't describe how disappointed I was. I know it's stupid but I was kind of hoping that the IIH had gone away, that in my case it was just a one off, never to be repeated event. I suppose I really do have this condition after all. *sigh*

Soooooo, I called the ward again and spoke to the registra AGAIN. He told me that he was going to write me out a prescription for Toparimate instead.
Here's the thing, i don't know if I'm happy about that. Of course I'm elated that I'm going to be able to breathe properly, but I've heard horrible things about Toparimate, especially the drowsiness. I've got a 22 month old son, I need to be "on my game" at all times.
We want another baby but I've researched Toparimate and it's DEFINITALY not recommended for use in pregnancy.
Should I just have ridden it out with the Diamox? 6 months gasping for air does not seem like an appealing prospect but neither does putting on hold our dreams for another baby.

i feel like I'm stuck between the devil and the deep blue sea. My haed is a complete mess, literally and metaphorically!

Can someone please take charge of my life for a while?

Kerry
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medmisfit
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PostSubject: Re: I can't breathe!!!   Fri Aug 24, 2012 8:53 pm

Oh Kerry, I wish I could! I tell my family and friends I'm tired of being my own case manager ALL THE TIME..it's truly exhausting!!!

My main concern is they stopped the Diamox all at once. I thought it was one of those meds that you need to wean off..of course you're going to be slammed with IIH symptoms if they just remove the meds! :Angry: I really don't understand..even if he took you off the Diamox you still have IIH, so there should have already been a plan in place to try something else..so sorry! As far as the Toparimate, I would just remind you that everyone is different. It's frustrating, but you just have to try them and see.

From everything I've seen and read a pregnancy can make IIH more difficult to manage, and I honestly don't think any of the meds are recommended during pregnancy. I would definitely make sure you have a physician that understands IIH and treatments before you get pregnant, so you can talk about all the risks to you and the baby. I'm sorry if it interferes with your plans for a family..I hope you find some comfort in the little guy you're already blessed to have!

I'm glad you're able to breathe again, and hope you find some relief w/ the new treatment. Please keep us posted, and take care.

hug
Julie
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Wylee
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PostSubject: Re: I can't breathe!!!   Fri Aug 24, 2012 10:07 pm

Wow Kerry, so glad you did your homework and got your doctor to listen to you. Unfortunately, sometimes we DO know better than our doctors!!
I agree with Julie about the Topamax. It has some side effects, as it seems all the drugs available to us do. Perhaps your good luck will continue and you will find them to be minimal. Once again, if the side effects do occur and are too much, there are still other drugs to try.
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mcleod80
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PostSubject: Re: I can't breathe!!!   Fri Aug 24, 2012 11:52 pm


Thanks guys.
You're right Julie, I definitely am blessed to have my little boy, he's absolutely wonderful!
I don't understand either why he suggested I just stop "cold turkey" on the Diamox. All I can come up with is that he either didn't believe I was experiencing EXTREME breathlessness, and therefore wanted to use me as a lab rat, or that he knew the IIH symptoms would come back so quickly therefore I wouldn't be off the Diamox long enough to make a difference to my health.
He did mention that there were other drugs aside from Diamox and Toparimate but that they tended not to use them as they didn't work as well! His words, not mine!

I've had a long discussion with my other half and we've come to the decision that we're going to put the "baby making" on hold, at least until I've seen the Neurologist at the out patient appointment. I would like to speak to someone in person and discuss my options for the future and also have a treatment plan in place for when we do decide to have another child.

As for the Toparimate......I'll give it a go. I suppose i can always go back to the Diamox, and slow suffocation, If the Toparimate doesn't work! ;)

Kerry
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Wylee
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PostSubject: Re: I can't breathe!!!   Sat Aug 25, 2012 2:54 am

Good idea on putting the baby making on hold, for the moment anyway. Once you are able to control your IH better, then you can explore your options. Diamox may be the first line of defense, but not the only med to try. As far as diuretics go, Furosemide is the common one.
I know of people who really liked the Topamax because it helped them lose lots of weight. They were able to manage with only a little hint of side effects, so keep your fingers crossed.
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pennyroyal
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PostSubject: Re: I can't breathe!!!   Sun Aug 26, 2012 12:45 pm

Hi Kerry,

I am allergic to Diamox and am on topiramate. I would say that the topiramate SR is better for reducing side effects. I know everyone is different but I certainly don't get drowsy - quiet the opposite - I struggle to get to sleep. The biggest problem I have found if being very weepy over very silly things. I am getting used to it and it has got better even though my dosage is increasing. But initially it was very hard going. I also find my teeth feel really funny - all tingly like my arm and legs did when I was on Diamox but just my teeth. Very strange.
Topiramate does have the added bonus that the weight is slowly dropping off me. I am losing 2lb a week with little change to my diet.

Hope this is helpful and good luck

Zoe
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mcleod80
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PostSubject: Re: I can't breathe!!!   Mon Aug 27, 2012 11:45 pm

@pennyroyal

could I ask in what way you are allergic to Diamox, what are your symptoms?

Kerry
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pennyroyal
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PostSubject: Re: I can't breathe!!!   Tue Aug 28, 2012 9:15 am

Similar to you in that I have problems breathing but Diamox actually increases my ICP. I am allergic to one of the ingredients in it and it causes raised pressure.
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mcleod80
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PostSubject: Re: I can't breathe!!!   Tue Aug 28, 2012 3:39 pm


That's REALLY interesting that you experienced the breathlessness as well, this is the very same breathlessness that doctors tell me doesn't exist and isn't a symptom of an allergic reaction or otherwise.
Hmmmmmmm.............I must say that since being on Diamox I know my ICP hasn't gone down, I still have the headache, pressure behind my eyes and the wooshing noise. I was a week symptom free after my last LP and they drained me down to a pressure of 15. Since then I've been in the hospital again but they refused to do an LP and couldn't get me a bed on the Neurology ward. I was told I'll just have to wait for my appointment on the 1st Oct but I'll probably have irreversible eye damage by then as my distance sight is already worse than a few months ago...................Getting a feeling I'm slipping through the NHS cracks!
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medmisfit
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PostSubject: Re: I can't breathe!!!   Tue Aug 28, 2012 9:09 pm

I'm sorry to hear that mcleod80! I don't know much about your area or NHS, but I believe they have a process for complaints. I also wonder if there's an advocacy agency like PALS in your area. If not, another option would be to have your vision tested and ask that ophthalmologist to advocate for treatment. They tend to move things along once a professional is making the request..it definitely helps when you're vision is affected. Just keep trying and let us know how you're getting along.

hug
Julie
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mcleod80
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PostSubject: Re: I can't breathe!!!   Tue Aug 28, 2012 10:51 pm

thank you Julie!
Will definitaly try the opthamologist route, didn't even think of that as an option! This is why I thank my lucky stars that I found this site. ALL of the advice and information I have received about this condition I have come across here, NOT the NHS.........I often refer to them as the NO HELP SERVICE!! That is not to say that I doubt that people do receive exemplory treatment on the NHS, I know they do, and more often than not they do a sterling job. Just here (Hull, UK) I have found them to be lack lustre at best, disinterested at worst! :lol1:

Kerry
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medmisfit
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PostSubject: Re: I can't breathe!!!   Wed Aug 29, 2012 7:09 pm

Glad I could help Kerry..let us know how it goes my fingers are cross
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