Heather,
Have you considered that it may be a shunt malfunction? I know that's not what you (or any one) wants to hear, but it really sounds that you may be having shunt problems. Headaches, loss of appetite, fatigue, nausea are all not good signs. I am glad you are going to see your neurologist. I think he can help you figure out what exactly is going on.
I understand your frustration as I am in the same boat. I go to see my NS tomorrow because I am still having headaches and pain. It's exhausting and depletes my energy and tries my patience. Hang in there girl. I am here with you.
Hug!
Mallory

Mallory,
Oh my gosh! If it is another shunt malfunction, as I have had two already in less than two years, I will lose it! I know it seems like it, and every symptom you mentioned is me exactly...I just cannot stand that thought! I want to be a strong one - here to support you all! Not really needing to ask for too much support myself and I know I have been terrible at that the past couple weeks!

I am so scared that it may be, though. I will admit I have thought about it...and I am terrified. I just don't know what to think! :(

I have not called my neurologist's office yet...I just decided, tonight, that I am going to stop being stubborn and go see him. The last time he saw me, in July, I was so hyper, and so happy! Now I am just annoyed! lol

And you're right...I am usually good at sleeping just my normal hours and then being up and active during the day, but the past 2-3 weeks, I have been so tired and have such a lack of energy. Oh man... :(

I know you are here with me...and I am so sorry you are! Girl, I really wish I could give you a big hug right now!!

You hang in there, too!

Hugeeeeeee hug!
Heather

Just to add something - I tried to go to sleep, after taking my nightly Ambien, and I could not fall asleep, my head hurt so bad...and then after about an hour of trying, I vomited violently. Now I feel worse and I don't know what to do!

Oh gosh, I hope you do call your neuro! We all try to be so hard headed and strong but sometimes our bodies just won't let us. I think it's time you give into it.....Your symptoms are very scary and I would worry that if not treated it may trigger a seizure. Trust me I hate going to the doctors and I hate hospitals! It took me 3 months before I went to the hospital because I just didn't want to deal with it. The checking in, waiting, waiting and more waiting.....But I was relieved that I did because my BP was so high they thought I was having a stroke! That freaked me out and I said never will I wait this long again to get help! Please call TODAY!...LOL

HUGS

Kim

Oh, I know I will get internet-slapped for this, but I have not called my neurologist's office yet! I wanted to try something first...I take Propanolol for both a very high heart rate (no idea why!) and to help with "everyday headaches," and it has been very good at lowering my heart rate and I just wanted to see if skipping my morning dose today (don't worry, I am keeping an eye on my heart rate) would help. I was thinking, last night, that maybe it was causing low blood pressure which was causing the severe headaches because they did not 100% seem like pressure headaches to me! At least not the ones I have experienced...

Well, here I am...about six hours after skipping that dose...and my headache has been decreased MASSIVELY since about an hour after I skipped it. I think I may decrease it for a week or so and also call my primary doctor to talk about it! I don't think she will need to see me for this...she knows me and my case so incredibly well...I used to see her about every two weeks and now I haven't in two months...it is nice to not need doctors constantly!

Also, for the pain I do have left, my mom is on the pain medicine (Oxycodone) and the muscle relaxer (Soma) that I was on before and if I need them, she will let me take one. I know some will be against that, but they are not medications I have never tried or medications that have interacted with, say, my seizure medication in the past.

I feel a lot better than I did last night!!!!!!! I hope this truly helps me....

Kim - I forgot to add this in my last comment - my seizures are pretty much under control with my seizure medication, Tegretol. I have had one in May, one in June, and one in August. The last one, after my dose was increased, was much, much less severe and lasted much less time. So we hope that the medication increase is the cause! I am not sure about any pressure or anything causing my seizures...we are not sure of the cause at this point...or where they come from, but the doctor is thinking they are generalized (effecting my entire brain).

My seizures usually come on from my medication being low - or at least the times I have had groups of them, or severe ones. I stay away from things that can lower it; missing a dose, alcohol, other medications, etc. So trust me, if I thought that was going to happen, I would be on that ASAP! PTC scares me, the pain scares me, but trust me, nothing in this world scares me more than my seizures! The last time I had a severe group of them, I landed in the ICU and was about to be put on a ventilator. I will never put myself in that position knowingly!

Well, I'm happy to hear that! I was about to come where you live and drag your butt to the ER!...LOL.....I'm glad the headaches are better too! Take it easy.....

HUGS

Kim

Awww, Kim! You are sweet haha. I ended up getting a pill from my mom and that knocked my butt out! That was probably the most restful sleep I have had in a week!

Can any of the shunting devices like the one you have, have it's performance effected by barometric pressure?

That's the first thing I thought of when you mentioned weather.

The point above was a good one. You don't want to trigger a seizure. Under control means NO seizures. The goal isn't to just minimize them, it's to eliminate them completely. Then you have a chance to be seizure free your whole life, and maybe even medication free after 3-5 years without a seizure when ON your meds. Minimizing or hopefully eliminating seizures also prevents any brain damage done by tonic clonics.

My seizures are hard to straighten out. I have simple and complex partials originating in my temporal lobe. Some might be migraine palindromes, who knows. I've been seizure free for about 2 years now (except for some that might be palindromes) and my doctor might let me try weaning off my seizure medication. Yaaaay!

Cowgirl, you probably know all of this last part. I'm assuming they've done eeg's on you, including a 5-day eeg? Based on the description of your seizures your doctor would know if they are generalized or partial, and most of the time an eeg would usually confirm it if it is generalized. About 30% of the time partials aren't detected on an eeg, during or inbetween the seizures.

For a diagnosis of IH they'd have to have done the MRI that's part of the diagnosis.

If they haven't run the tests on you, ask!

Michael - I have no idea...I will look into that!!! Thanks for mentioning that!

Sea - Wow! I hate to say this, but I am kind of glad to know someone else who has dealt with both seizures and the PTC!!!!

I guess you are right, well, I know you are, lol. I have to get to the point that they are eliminated. I am happy, at the moment, with not having them as often and as severe. That is a step in the right direction! Do you know if seizures can cause PTC? Or, well, IH. I have no idea, and I am thinking not, just asking! When I first noticed symptoms, I had eye pain in my left eye for four days and five days later, I had my first seizure! Crazy timing, huh?! I was put on anti-seizure medication, but the two I tried before (Dilantin and Keppra both) did nothing for me. They kept increasing my dosage on Dilantin and I eventually became toxic and it caused Nystagmus! That was crazy...feeling my eyes dart back and forth was very uncomfortable!!!

They have done both EEG's and the 5-day EEG on me. The 5-day was done a few years ago and I was not having the same kind of seizures that I am having now...these are different, more severe and very dangerous. The doctor's have confirmed that. They have done EEG's on me...but I just started seeing my current neurologist (a specialist in PTC) in May and he didn't officially start taking over my seizures until June. So it's still early on! I am calling him Monday because we are supposed to be setting up an EEG!

And I was not aware of the fact that the EEG's can miss those...thanks for the information!! I just want my seizures to be completely gone because, not only do they scare everyone around me (I have no memory what-so-ever of them), every time I have one, my shoulder ends up dislocated. And that right there is incredibly painful. I can't move it most of the time and then, at times, it is like an electric shock goes down my whole arm. It feels like I stuck my entire arm in an electric socket...so painful and just overall uncomfortable!

Thank you so much for the input! I appreciate it so much! :)

Heather

Hi, Heather,

I've always wondered if IH could cause seizures. (The other way around from seizures causing IH) If we had hydrocephalus no one would question that the disease can cause seizures - some literature says it can.

Hydrocephalus is csf pressure that is too high from the inside of the brain out, not the outside pressing in like IH. Hydrocephalus is much more common than IH and there has been much more research.

Migraine auras can also imitate simple partial seizures. Those that suffer from migraines as well as IH can have some pretty weird stuff going on that might be IH, might be migraine palindroms.

As for the complex partials - I don't remember those either. It scares me, and it's dangerous. I've been lucky so far. Just cracking my head a few times. I don't have TC's (generalized seizures).

It's all puzzling. I wish we had more answers and we could do better at fixing everything instead of chasing just symptoms with too many meds.

I agree! There are too many meds!

Your point about IH and seizures (or hydrochephalus and seizures) is interesting! It is so scary to think that we could have two separate brain issues - let alone one! I'm not sure if I would feel better or worse if they were connected!

Yeah, mine are most definitely TC, we know that for a fact...just why do I have them? I have no aura and such...I was laughing at a TV show with my mom, feeling completely normal, one time and in the middle of laughing I went right into one! Scary :(

Again, just wanted to add in here for y'all...my headaches have now decreased about 85% and I feel pretty great (despite the severe pain in my side). I am really thinking it was Propanolol causing low blood pressure!