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 symptoms coming back, again!!

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Wylee
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PostSubject: symptoms coming back, again!!   Tue Jun 26, 2012 10:37 pm

Oh man, just when things were looking up, again, my symptoms have been coming back. First in drips and drabs, making me question whether or not it could be, but the last few days, they have been flooding back. The balance issues, the brain mush whenever I turn my head, the cognitive issues including difficulty spelling :roll: but the worst is the nasty brain fog while driving. Brain mush is in full force just as soon as the car starts to move. UGH!
I saw my GP this morning for a check up, and told him I thought it would be nice if he would become the ringleader in this merry group of docs that I have, and oversee everything. He looked at me with those big, sad, puupy dog eyes and said that he wished he could but he doesn't know enough about any of it to do it. Bummer. But he is sending a message over to my Neurosurgeon to see what is the next step. I suppose some kind of test to see if my shunt has failed?? I seriously doubt it is my meds causing the symptoms, I added Gabapentin (nerve pain med) to the group on May 15th, so the side effects should have started way back then, not in the past week.
Also, I have had a couple of real sharp pains in my side, right where the shunt's valve is located, and some nasty bouts of abdominal pain that has lasted a few hours. Well, it has been almost 8 months since the install, so I guess it would not be unusual for needing a revision at this point.

Anyone have any suggestions as to how to tell if a lp shunt has failed??
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PostSubject: Re: symptoms coming back, again!!   Tue Jun 26, 2012 11:02 pm

Its happened to me several times, and I've had abdominal pain, and symptoms like yours. I thought this link will be able to give you a lot more information because its from Medtronic [You must be registered and logged in to see this link.]

I know it's frustrating after it being so successful, but unfortunately it does happen but it can be put right, although it may mean more surgery. I'm so sorry that this has happened just when you were jogging along so well.

Heidi hug
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PostSubject: Re: symptoms coming back, again!!   Wed Jun 27, 2012 12:25 am

I'm sorry you're having symptoms again! :( I don't have any experience to share regarding shunts, just wanted to let you know I'm thinking about you and hoping for the best! *hugs*
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PostSubject: Re: symptoms coming back, again!!   Wed Jun 27, 2012 2:11 am

Linda, I'm so sorry!

I don't suppose Gabapentin is one of those meds that can take 2-3 months to build up in your system? You can develop intolerance, so I wouldn't completely rule it out. Immediate response to meds is usually due to allergic reaction but intolerance occurs as your body adjusts to meds, so I would definitely mention it. Is this something that developed over time or happened suddenly..have you noticed little things along the way or everything came on all at once? I hope you're better at keeping a symptom log than me..that should help neurosurgeon figure it out. My surgeon said change in body & different things may lead to tweaking the valve, so maybe that's all it is..change in diet or weight? I'm just totally brainstorming & hoping it's a simple fix! I know I had symptoms for about a week after I fell..each day was a little worse, then full blown symptoms. I spent an entire day resting & drinking caffiene/fluids & the next day was better. It's all so frustrating & scary..my thoughts & prayers are with you!

Take care, & keep us posted,
*hugs*
Julie
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Wylee
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PostSubject: Re: symptoms coming back, again!!   Wed Jul 11, 2012 4:38 pm

I have an appointment to see my surgeon in mid August. Until then, trying to lose weight, again. It is so hard when I feel so darn dizzy!! My dizziness has changed. It used to happen only when I moved my head, now I am feeling the dizziness all of the time, but it is worse when I move my head, or I move (like walking or driving). Really wonder what is going on. :roll:
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PostSubject: Re: symptoms coming back, again!!   Wed Jul 11, 2012 4:59 pm

there is some evidence that GABA agonism can contribute to brain edema, although I think that GABA antagonism of glutamate effect is more important in protecting against brain edema. and this study:
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looking at Gabapentin specifically shows a reduction in brain edema with it's use.
so I doubt it is the Gabapentin and with the abdominal pain it does sound like a shunt malfunction. but I don't have one and I am definitely not the expert on that.
good luck......
Deb
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Peppermintpie76
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PostSubject: Re: symptoms coming back, again!!   Wed Jul 11, 2012 7:31 pm

Hello everyone,
I have just found and joined this foundations recently.
So to introduce myself, My name is Penny and I live in the States. I am a 35 yrs old and have been very heathy all my life in the last 13 yrs I have gained quite a bit of weight...So this past February my husband and I joined the gym and changed our diet. Everything was going good . I had lost over 18 lbs, until one day back on April 14, 2012.
This begins my story of IIIH. I was at work on a Friday, it was a very busy day and had been a long week. Thankfully it was after lunch and I was in the home stretch couple more hours and it was the weekend. The first thing that I noticed was tingling on my lip like I was getting a cold sore,and I was having a hard time thinking correclty. On Saturday I had woken up with a huge cold soar on my lip. My first thought is great I am getting a cold. That night Hubby and I went out to Play Bingo with friends, during Bingo I started getting a headache, and being a normal mother and wife dug through the medicine cabinet (aka the purse) for some ibuprofen. Evening came and went my headache didnt't
Sunday whole family went to the in-laws to help with some spring clean-up and have a bbq. Still had headache and was feeling very tired and nauseous. We went home and at 2pm I went and laid down and at 8pm husband woke me up asking if I was ok and did I want anything to eat. I ate sometinhg and back to bed soon after. Monday morning woke up to get ready for work and I couldn't go I felt worse headache was worse everything was worse, and this kept going day after day. On Wednesday morning April 18th I finally decide to call primary drs and get appt. Had appt- she really didn't tell me what was wrong with me she put me on an anti-viral, antibiotic, and some pain medicine. She scheduled follow-up for Saturday April 21st with a fellow dr because she was going on vacation.Took all medcine no relief I didnt feel better I was starting to feel even worse. When I saw dr he was worried about meningitis and sent across street to hospital. Got in room rather quickly they asked all types of questions. Sent me for Cat Scan....clean, did blood work.....clean...did lumbar puncture.....clean (I guess at the emergency room hospital doing an opening pressure is not something they do as a standard). Wish they would have might have save me alot of grief. But anyway, finally they gave me morphine...nurse left room and came back 10 mins later asked how I was feeling. At this point I cant handle lights, noises. I asked if she gave me morphine because nothing changed. she said yes and gave me a little more. They wanted to admit me I wanted to go home..I do not particulary like hospitals. Finally after being there 8 hrs, they let me go home with new meds for pain didn't work. Sunday I woke up the same went grocery shopping with hubby to get out of house I had stayed out of work at that time for a week. Get home with messages on my voicemail, from my primary dr go back to hospital they now think it is encephalitis. Went back after seeing another dr they ruled out encph. But they admitted me to do more testing, they also started leaning towards migraines... explained my symptoms to umpteen millions drs finally had an MRI with an MRV.....both clean took neurologyist day and a half before they came in and told me... First night there the gave meds they normally use to get rid of migraine didn't work....went through so many types of meds I forgot all the names... I went through 3 IVS in 4 days finally the last one was a mid-line so they wouldnt have to redo IV every 24hrs. I had an allergic reaction to something or just having so many drugs in my system in a short period of time. I swelled up like a balloon and started having heart palpatations. The neurologist was useless she said they did all the tests and everything came back normal so I should be thankful I didn't have any of the nasty diseases. On the last day there she started asking me if I was under alot of stress and maybe I should see someone to help me...I was so pissed off here I am having a headache so bad it feels like the top of my head is going to pop off and she says I need to see a pyschiatrist. Finally that night another dr gave me a cocktail of narcotics it took away the pain of the headache but not the pressure. I asked to go home..and I did. So to bring you up to where I am now..I have seen a new neurologist who didn't have all the test results back in June from all the testing so when I went to see her on July 2 she had all the results and asked some questions....finally she tells me I need to have another LP because she is pretty sure with all the symptoms I have it sounds like IIH......So finally someone has an answer after go to the drs twice a week for 10 weeks. Unfortunately, she couldn't schedule the LP right away so I have been waiting, not so patiently until this friday the 13th, to confirm the diagnosis. I was put on Dyazide in June by my primary because of my blood pressure being higher recently..Neurologist called them to change to Lasix...been on it for 5 days now. I am nervous of Friday but then again I am looking forward to having some answers so I can work out how to live with this. I would rather know than not know.....I am just glad to be able to put a name to it instead of my friends saying .....you still have a headache...and I have to tell them no I still have the same headache from April 14th.
Sorry this was so long winded I appreciate being able to chat with other people who know what I am going through and don't think I am crazy...I have not be able to work since this started and am unsure of my future ability, but am looking forward to seeing what I can and can't do

Thanks again,
Penny Smile
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Wylee
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PostSubject: Re: symptoms coming back, again!!   Fri Jul 27, 2012 12:53 am

I emailed my three Docs on Tuesday, who then got the Neurosurgeon in on the loop (it is so wonderful to have such a great line of communication with my Docs!!) about my symptoms coming back. Now I am waiting for someone to decide who moves first. Still no decision on anyone taking the lead, but my Neuroradiologist suggested drawing off fluid and getting my shunt adjusted, the Neurologist said to see her a month after that is done, and the Neurosurgeon said his PA could do the adjustment but he wonders if it is shunt failure in which case the adjustment is a waste of time. So, waiting to hear back from the NS about maybe having his PA do the lp, draw off fluid and adjust shunt first, wait and see if that works, and if not do the tests for shunt failure. Meanwhile, I wait.............
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medmisfit
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PostSubject: Re: symptoms coming back, again!!   Fri Jul 27, 2012 9:35 pm

Thanks for the update Linda. I'm glad you have a supportive network too..at least you know someone's going to do something at some point! It really is amazing how much we hurry up and wait. I hope it's just a growing pain and an easy fix..hang in there!!!
Take care,
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Julie
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Wylee
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PostSubject: Re: symptoms coming back, again!!   Sat Jul 28, 2012 8:23 pm

How true, Julie. Did get a call from the NS's office late Friday. I have an appt with PA on Wednesday to adjust my shunts valve. Guess we'll find out if it's working by how I feel in a few weeks.
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medmisfit
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PostSubject: Re: symptoms coming back, again!!   Sun Jul 29, 2012 4:44 am

That's good to hear..I'll keep my fingers crossed! Let us know how it all goes.
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PostSubject: Re: symptoms coming back, again!!   Sun Jul 29, 2012 4:29 pm

Hey linda, im sorry to hear about the symptoms coming back. I have had 5 surgeries since Feb of this year, my last was around the first of July. I always seem to do real well out of the gate so to speak but unfortunately my shunts kept failing. I would suffer the symptom's again. It is very frustrating. I like you asked if my family dr could be the ring leader and got the same answer. They had to remove my lp shunt and they put a vp shunt in my head. Mine does have a valve. I did good at first but now my symptom's are back. My drs are having me wait tilTakl they figure out what to do. I am on Gabapentin as well. As for the pain in your belly I suffer from that as well. Mine they determined is from the tubing. When they removed it all from my back they had to let my body rest before they put the vp shunt in. All the pain went away. When they did the vp shunt they ran the tubing back to my belly land now the pain is back. There is nothing for they can do they said except run it to my heart, That I am not willing to do at this point. I so sympathize with you. I would have them adjust your shunt first before they draw off fluid that way you will know for sure if it is your shunt failing or not. I dont know if you suffer from any vision loss? I do and I can always tell when mine is not working because it will get better at first then go back to where it was or worse as the pressure builds up again. My thoughts are with you Linda, not sure if anything I wrote helps just giving you what I have experienced. I hope it helps. "Hugs"
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Wylee
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PostSubject: Re: symptoms coming back, again!!   Mon Jul 30, 2012 6:30 am

Thanks for your input, Cindy. We learn so much from each others experience.
My situation is a bit different. I had Shingles in my head which messed up the CSF outflow. My symptoms are am bit different too. Dizziness is primary. That leads to cognition issues.
I do not have vision loss, luckily.
Wednesday will be an interesting day.
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mhaimowitz
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PostSubject: Re: symptoms coming back, again!!   Tue Jul 31, 2012 1:32 am

Linda

First I need to thank you for reaching out to me with your personal message to see how I am doing when you appear to be going through much yourself. I haven't been on this site in months mainly because I am not sure if I belong here anymore and not sure where I belong.

When last we spoke I was to go into the hospital at Mayo for my shunt surgery on April 18th (Wednesday). On the Friday before my scheduled surgery the NS office called me and said that the NS wanted to see me that afternoon. I was still at Mayo after going through so many presurgery tests and meeting with different doctors. When I met with him he told me that the LP that I had at Mayo earlier that week had a normal pressure and that he had doubts about doing the surgery or that I even had IIH. He insisted that I come into the hospital on Monday April 16th to have a lumbar drain test to either confirm that I have IIH or to rule it out. If I had high pressures he would still do the surgery while I remained in the hospital. Over almost 48 hours my pressure fluctuated and spiked at times but in general was below the threshold that would confirm the IIH and so he cancelled the surgery. At this point one would think that I would be released from the hospital however that was the furthest from the truth. It seems that when they did the lumbar drain they injured the nerves that go to my bladder and catheterized me.

Additionally they had a new hypothesis that my intense pain was a result of years of narcotics that were taken to relieve the pain. They put me on a 3 or 4 day drip of Thorazine to detox me. After an entire week in the ICU they released me on the evening of April 23rd and told me that I would have to go home with the Foley. The next morning my left arm was so swollen that I could not touch my hand to my face. The right arm was also swollen and painful but not as much as the left arm. I called the neurologist that was treating me in the hospital expecting him to tell me to come into the office so that he could treat me. Instead he insisted that I go to the ER as I had already been released from the hospital (only 13 or 14 hours ago). In other words I was no longer his patient due to being discharged. At the ER they did a sonogram of both arms and determined that I had blood clots in both arms caused by the multiple IV's while I was in the hospital. I had to give myself injections of a blood thinner Lovenox twice daily in my abdomen. Meanwhile I had the Foley removed and put back in numerous times as my bladder wasn't healed yet. It was a nightmare that just kept on over and over.

At the time I was discharged the neuro team felt that my symptoms were similar to a form of chronic daily headache called Hemacrania Continua. He sent me home with a script for an eight day decreasing dose of a drug that would help if they were correct with the diagnosis. The drug was called Indomethacin and after the 8 days I was still in horrible pain. They also had me take Gabapentin which I stopped as it was making me feel strange. My neurologist switched the Gabapentin for Lyrica which is said to be good for neuralgia.

I continued in pain and also started exhibiting cognitive issues. They did 6 hours of cognitive testing and expected to see some problems in the left hemisphere as I had told them that I was having difficulty finding the words that I wanted to say and that I was not functioning well back at work. What they found was that I scored high on all tests that would indicate issues with the left hemisphere but scored well below average on tests that indicated a significant deficiency on the right side compared to the left. The doctor told us that I was not processing images properly. That along with my other symptoms of tremors, language trouble, abnormal sweating, and confusion suggested possible Parkinson’s which has since been ruled out.

At the same time I had been referred to a pain management doctor who has since done two different nerve blocks of sympathetic nerves that go to the face and head. Neither of those worked and I may have another block of the trigeminal nerve which is a bit trickier and had more risk.

While in the hospital they noticed that my oxygen level was low while sleeping. They sent me home with an overnight oximitry device. I went to the sleep disorder doctor that discussed the oximitry test. He believes that I have significant sleep apnea that is most likely obstructive. He explained that if I am not getting quality sleep that could be the possible cause of the cognitive issues but not the cause of the pain which has intensified over time. I am scheduled for an overnight sleep study at Mayo on September 9th.

So to sum it up Linda I am still in flux not knowing positively the cause of my pain nor having hope that it will go away. I am back on narcotics (Loratab, Fentanyl) which rarely provide much relief. I have been deeply depressed, have increased agitation, anxiety and temper. I have not been on this site or other IIH sites as I’m not certain that I belong in this "club" anymore. I feel lost and see no end in sight.

Thanks again Linda for reaching out to me. I'm sorry if I only brought you down even more by my misery.

Best regards to all

Mark
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PostSubject: Re: symptoms coming back, again!!   Tue Jul 31, 2012 1:36 am

By the way I still don't do Facebook but started using Twitter with the same user name (mhaimowitz).
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PostSubject: Re: symptoms coming back, again!!   Tue Jul 31, 2012 4:16 am

Oh Mark, my heart goes out to you. How terrible. I was so hoping that by now theyr would have been able to determine just what is causing you so much trouble. What a nightmare. I feel so bad for you.

I am sure I speak for all of us here on the forum when I invite you to spend time with us. You are always welcome here, regardless of whatever the docs finally diagnose. You do have some of the classic IIH symptoms and perhaps if we can help you work on those it will have a cascade effect and help the other symptoms.

My symptoms are nothing compared to yours, so please do not feel bad for me. I have been very fortunate that my pain is do-able. I have a high tolerance and the amitriptyline and gabapentin seem to keep it at a level that I can live with (not gone but always just below the surface). How awful that after having to go through detox that your pain has become so unbearable once again.

Thank you for giving us the update. I just wish you had better news. Keeping fingers crossed
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PostSubject: Re: symptoms coming back, again!!   Tue Jul 31, 2012 8:06 am

Dear Mark;
what a frustrating and painful story. I am so sorry, and to be left still not really knowing what's going on. but you may have a glimmer here; I am not sure why they are waiting so long to do a sleep study, since it sounds like you aren't breathing in your sleep properly and last I checked breathing is pretty important.... but anyway, if you can get some treatment for the sleep apnea hopefully you will have improvement in all your other problems, because sleep apnea makes everything worse. it raises intracranial pressure. one would wonder if they are measureing spikes during apneas but then your pressure comes down when you are awake? if you have problems with CPAP, make sure to ask about BiPAP, as it seems to be better tolerated for those of us with IIH.
Deb
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PostSubject: Re: symptoms coming back, again!!   Tue Jul 31, 2012 11:49 pm

First i would like to officially give thanks to Linda. If she had not contacted me i dont know if i would connect with all of you. I see on everyone's profile the number of thanks but i cant find a button to provide Linda with another thanks.

I am overwhelmed by your responses to my posting. I cannot express how much it means to me. This site provides a means for kindness and empathy to be expressed and i am greatful and appreciative that it is available and that i can be included.

Kind regards


Mark Haimowitz


Last edited by Heidi on Thu Aug 02, 2012 6:39 pm; edited 1 time in total (Reason for editing : In member's interests phone numbers deleted for privacy)
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PostSubject: Re: symptoms coming back, again!!   Wed Aug 01, 2012 12:15 am

Mark, I am a firm believer in paying it forward. I was helped by some very caring individuals during my darkest days and was so moved that I now try to return the favor to others. I can feel your pain through your posts. Your symptoms are coming back, too. We have to keep strong and keep fighting (the symptoms) and together we can get better. And thank you so much for your kind words.

I wrote an email to my Neurosurgeon and Neuroradiologist today, asking if the PA could draw off some fluid to get this process started sooner. I'm bouncing off the walls again. Got emails back. The Neuroradiologist (the one and only, the world's best: Dr. Linda Gray Leithe) has fit me in to do a lp tomorrow at 11. Oh happy day!! Not quite sure what will take place if my ICP isn't back up to the twenties, except maybe lower it all the way down to the single digits and see if that gets me back. I am just so grateful that these docs are willing to "go the extra mile" and then some!! Just looking forward to being able to move my head and not have the whole world spinning each time I do.
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PostSubject: Re: symptoms coming back, again!!   Thu Aug 02, 2012 4:59 pm

OK, so I had the lp: opening pressure was 13.5 And since she was there anyway, Dr. Dray did a myleogram to check the shunt's patency. After checking twice (first time no sign of dyd in my abdomen) and waiting 4 hours, I got the word that my shunt is working. Went to see the PA who adjusted the valve from 11 to 10. That should put be in between the original setting and this last time. He said it should take 2 weeks before I notice anything. Dr. Gray had added the fake spinal fluid (checking to see if my pressure was too low), and then the dye, so my pressure is really screwy right now. Feels like my head is full of cotton balls. Can't wait for that to go away.

We'll see how it goes........
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PostSubject: Re: symptoms coming back, again!!   Thu Aug 02, 2012 5:20 pm

Glad to hear they were so thorough! I hope you find some relief w/ new levels..btw, have they ever considered adjusting meds? I've often wondered why you're still taking them w/ the shunt..figure it has to do w/ the Ramsay Hunt or something, but I'd think it would affect your levels. I'm sure you've discussed it at length, but I don't remember seeing anything about it. Regardless, I hope they're able to get you back in good working order!!!

Take care,
hug
Julie
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PostSubject: Re: symptoms coming back, again!!   Thu Aug 02, 2012 7:22 pm

I'm so pleased your shunt was working and it wasn't a blockage or anything. I firmly have

[You must be registered and logged in to see this image.] Hopefully everything will get back on track for you now. hug
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PostSubject: Re: symptoms coming back, again!!   Thu Aug 02, 2012 7:25 pm

Great news Wylee. You deserve all good things that come your way.

Mark
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PostSubject: Re: symptoms coming back, again!!   Fri Aug 03, 2012 2:19 am

Mark -- it's great to see you again, and sorry things are not going along better for you. You continue to be in my thoughts and prayers often. Stay strong!

Wylee -- Great news that your shunt is not blocked! Smile I'm hoping you start feeling lots better soon! *hugs*
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