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 Megan - Diagnosed Feb 9, 2012

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MegClever
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PostSubject: Megan - Diagnosed Feb 9, 2012   Wed Jun 20, 2012 11:54 pm

Hi everyone, I am so relieved to have found you. I am a 33 year old mother with two young children. I am divorced and on my own with my kids so this has been a very difficult journey. I am very lucky to have an incredibly supportive family as I would not be able to get through this without their help every single day.

My story sounds very familiar to everyone else's. In November of last year I started feeling like my head was going to explode. It wasn't a headache - I just felt intense pressure, like someone was squeezing my head. I thought it was just a sinus cold so I took tylenol and tried to ignore it. I started noticing I was having trouble reading and concentrating at work, but I thought I was just overtired. These symptoms continued until February when all of the sudden it literally did feel like my head was going to explode. I have never experienced that level of pain before, I went to my GP and was diagnosed with a migraine and given meds. The headache got worse so I went back to my GP and they gave me a different migraine med. It still got worse to the point where I could barely stand up, and I started vomiting. I went to the ER and they again said it was a migraine and gave me an iv dose of migraine meds. The next day I was still not better so we went back to the ER where the doctor looked at me and said as I was overweight I could have this condition called IIH. They did an lp and the opening pressure showed the IIH diagnosis. They then transferred me to a hospital with a neurological floor where I started seeing a wonderful neurologist who was able to back up the diagnosis. I spent a few weeks in the hospital and was released to recover at home. I am on 2000 mg of Diamox a day and I am hating the side effects. The pain is still very intense so I am also on heavy narcotics around the clock.

I was rushed through for bariatric surgery and had that on April 25th. I was told that losing weight would help, however I have only lost 10 pounds with this surgery, and nothing in the last month. I consume 600 calories a day and am not losing weight. My neurologist has not offered any other advice on where we go from here so I am incredibly confused and anxious about what happens next. I am off work right now and really struggling to take care of my kids. I do keep a pain and symptom journal as well but that is more to show my neurologist that what we have been doing isn't working. I just want my old life back and I just want to know what happens from here. When will I go back to work, will the symptoms go away, will they come back, will I be able to have a normal life again?

That is my story, sorry that I sound down - I am having trouble coping with being in pain everyday. Good thing I start seeing a therapist tomorrow!


Last edited by Heidi on Sat Aug 04, 2012 7:24 pm; edited 2 times in total (Reason for editing : Add a sentence!)
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Wylee
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Thu Jun 21, 2012 1:02 pm

Hello Meg and big welcome

I am so sorry to hear that you are still in so much pain. Did you get any relief at all immediately after having the lumbar puncture? Often, that is the sign as to whether or not a shunt may be of benefit. That may be something you will have to consider down the line.
I am very curious as to why you are not losing weight. Usually the pounds drop melt away, especially in the early stages. What has your doc said about that? Could you be retaining water?

So glad you have joined the forum. You will find many supportive people here. We are not medical folk. We are just regular people like you, regular people with IIH. Feel free to come here anytime. We'll grab a cup of coffee and try to help out anyway we can.

In the meantime, sounds like you could use a big bhug
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Heidi
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Thu Jun 21, 2012 6:10 pm

Hello MEgan and a very warm welcome to the group. hug You should never apologise for how you feel, especially here. You are having a tough time and as you say, your story is not unlike all of ours. This is why we know excatly where you are coming from and why.

You are doing all the right things keep symptom and pain journals because they give a full and updated account of what you are experiencing. Are you not being checked by the surgeon who did the bariatric surgery at all? As it was him who did your surgery and has knowledge about that, maybe he could shed light on why you aren't losing the weight despite the surgery. Your Neurologist perhaps hasn't got he experience in that area to be able to tell you why this is the case with you, but the surgeon who did the surgery could.

I think once you have been able to speak to someone with knowledge regarding bariatric surgery and weightloss, it will make a big difference, because you will have the information and understanding you need about it, which I don't think you will be able to get from your Neurologist. Then you will at least be able to inform your Neurologist about what you've learned about it, and he will then know what to do next, or he could perhaps communicate with the surgeon you had.

Do you see a dietician at all or have you been left to your own devices since the surgery? The impression I get, is that you were rushed for this surgery and have had very little follow up from it since, and because of this, you have been left with more questions than answers, and very little information, which is no wonder you are confused and don't know where to turn. I would have thought that with this kind of surgery, the surgeon or doctor who you saw for it, would have been reviewing you for a while just to check everything was going well.

Get in touch with the bariatric surgeon or someone there and talk to them, make sure you tell them the date you had surgery and how things have progressed since then. You can then either ask them if it is normal to be losing weight as slowly as this or ask for an appointment to see the surgeon who did your surgery, so you tell him your concerns etc.

Please keep us updated, and I do hope that this gets resolved for you. Always remember we are all here to support and help you as much as we can.

Heidi hug


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MegClever
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Thu Jun 21, 2012 11:46 pm

Thank you guys. I actually am under the care of my bariatric surgeon and a dietician. I see them again next week. They have no clue why my weight loss is so minimal, but blame the IIH. Yes I was rushed through for the surgery but while I was in the hospital I was at least able to research quite a bit. I am hoping my neurologist can give me some more ideas on Monday when I see him. I need something more lasting for pain relief. We have tried pain patches and botox injections and those haven't helped. I am not sure what the next move is. I guess I am just scared about what is going to happen to my job and my kids. I have been off work for 5 months now and will end up on long term disability in a month. How do I work with IIH? Or will it go into remission and then I can go back to work? No one has been able to answer these questions for me. I feel so lost. But I am happy to have found this group, I don't feel alone anymore. Thank you!!!
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Thu Jun 21, 2012 11:47 pm

Welcome to the group, Meg! Very Happy I'm so glad you've found us and I hope you'll find this site to be a great source of information and support, just as I have.

I'm so sorry to hear how much you're still suffering with your IIH ... like the others said, I cannot imagine why your bariatric surgery has not caused you to lose a more significant amount of weight, and I would definitely consult with the surgeon who performed the surgery to find out what's to be expected. I know what you mean about the Diamox side effects! You're on a pretty high dose of it. I started out at 1500mg and am now down to 1000mg after some weight loss. So perhaps you'll be able to maintain at a lesser dose too as you begin to lose weight ... side effects have been lesser for me at the lesser dose.

Try to stay positive and hopeful. I know it's hard when you are hurting so badly, but for me, I have to hold on to hope. Things have gotten better for me, there are a lot of us here who have had positive outcomes with our IIH, so stay strong, and keep after these doctors to get the help and information you need! *big hugs* Please let me know if you have questions or if I can be helpful to you in any way.
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Fri Jun 22, 2012 12:02 am

Hi Megan..I just wanted to add a quick welcome too. I'm so sorry you are suffering with IIH & they added surgery recovery to the mix! I can't imagine how you're managing to care for yourself at this point, let alone adding two small children to the mix. I agree with the others..you need to find out why you aren't losing weight. I know they're doing research about retinol & hormone levels affecting our ability to lose weight, but I would have thought even surgery would negate that theory. I'm glad you have a neurologist you like & you're open to getting support from a mental health professional..every little bit helps! I hope they'll be able to figure it out & get you on the right track soon..the symptom & med journal should help. I'd also suggest a food log, if you're not already keeping one..it may help them narrow down this issue.

Good luck, & take care!
Julie
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Heidi
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Fri Jun 22, 2012 12:20 am

Megan it is possible to work with IIH once your symptoms are under control. I worked myself from diagnosis up until early retirement 6 years ago, so I actually worked for 18 years while on the medication and having lumbar punctures when necessary. Please don't give up hope and it might help to read this by our Partners the Brain and Spine Foundation. Work, school, career: overcoming problems if you have a neurological condition
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Wylee
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Sat Jun 23, 2012 2:02 am

Meg, the Diamox is not a pain med. It is used in an attempt to have our body's produce less spinal fluid, which should. in turn, keep the fluid pressure down. You may want to ask about switching to the Diamox extended release capsules (sequels) as they seem to have less intense side effects. And meds for the pain are the toughest one of all. Often the headaches are so severe that only the most heavy duty pain meds will even touch it. I hope that you will not have to go through that. I hope that you will find relief way before then.
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Sun Jun 24, 2012 6:46 pm

Dear Megan;
the other thing associated with obesity is obstructive sleep apnea, and there is a link between OSA and IIH. sleep apnea can raise intracranial pressure. OSA is my biggest trigger of my ICP. last night there were problems with my CPAP, I woke feeling a vibrating in my throat like the mask wasn't working somehow, and I woke up with a migraine and severe brain fog. If I treat the OSA well, I can get by on only 62.5mg twice a day of the Diamox, and it aborts my menstrual migraine pattern.

losing weight can make OSA better, just like losing weight can make IIH better: is it the same reason? however, to say that obesity causes OSA is really not completely accurate. it is actually a narrowing of the upper airway that causes OSA, and I am in the process of publishing a paper that outlines the data that support my theory that it is actually OSA that causes obesity, by setting up a metabolic resistance to weight loss. therefore the obesity in OSA is a vicious cycle whereby the OSA makes you gain weight and the weight gain makes the OSA worse. but I was just as sick when I was thin so I do not believe that for me weight loss will help. it all depends on what is going on in your upper airway. losing weight will definitely help you in many ways, but it does not help all of us with IIH. or OSA.

all that said, if I were you I would ask for a sleep study and make sure you are not missing something important that could be contributing to both your obesity and your IIH. most doctors don't really understand sleep apnea fully, so if you have to tell them that you snore even if you don't, go ahead. I can't imagine they won't find it, given your weight, but just to warn you, I had to go to Stanford to get diagnosed because the local lab could not detect my apnea. perhaps if you get on CPAP for your OSA, there may be less resistance to weight loss?

good luck!
Deb
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Wylee
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Sun Jun 24, 2012 9:14 pm

Hey Deb, a friend of mine has Ehlers-Danlos Syndrome, which also is related to IIH. She found out about the EDS because of severe jaw pain. Seems like ICP may make all sorts of things in our heads go haywire.

How are you doing Meg?
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Sophiasmom
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Mon Jun 25, 2012 12:28 am

Wylee (is that your first name?),
Ehlers Danlos is a condition of abnormal elasticity of the skin. I cannot find anything on pubmed but it makes sense to me that the upper airways of these people would be exceptionally prone to collapse, causing increased risk of OSA. if this is true, then what is the true relationship of EDS to IIH?
and OSA may be the number one cause of TMJ problems, at least per my orthodontist who I think is a genius. the abnormal vertical development of the face which predisposes to OSA also creates an abnormal relationship of the TMJ joint in its socket, causing problems. my TMJ discs are completely dislocated.....
Deb
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Wylee
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PostSubject: Re: Megan - Diagnosed Feb 9, 2012   Mon Jun 25, 2012 2:30 am

My name is actually Linda.

EDS has many forms. It is a connective tissue disorder.
Among other things it has caused the brain to disconnect within the skull and it drops causing a Chiari and Iih.
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