New symptoms

[CB1122]

So I posted a while back about my vertigo/dizziness, slow cognition, trouble finding words... and I just wanted to post what is going on with my symptoms now and see what feedback you all could give me.

For the past 2 days I have had this pain in my neck/base of head. My neck feels somewhat strained and it feels like a headache in the base of my head. There is also just pain where my neck and head connect... hard to describe, but its not constant. I haven't really had any vertigo this month, but I have had dizziness/loss of balance and this weird sensation/pressure like feeling in my head. The past two days my neck/head pain will decrease and I'll feel almost normal if I sit down and don't move but as soon as I am active again (taking care of baby, dog, cleaning, etc) The pain comes back. Also the past two nights I have had stomach pain that I've never had before. Oh and what drives me crazy is this leg weakness. My legs feel soo weak, but I can stand on them, but sometimes when I'm walking my legs just give out, my knees just buckle.  Oh and one more thing I had randomly fro the past couple days this weird sensation in my throat, like a tightness, or heaviness, and today my voice felt weird when I talked.... could just be me being a hypochondriac, but figured I would share...

It seems that my symptoms gradually come on during the second week of the month and grow in intensity, then gradually go away for a few days.

I am currently on Verapamil for Migraine headaches (I don't have migraine headache pain) the Dr. thinks my vertigo is from Silent Migraines.... and of course when I try to call him to tell him the meds are helping my symptoms and I have new ones.... he is unavailable - ugh!

My husband wants me to just tell the Dr. I want off the meds but it feels so awkward to me to tell the dr. that. We already mentioned Chiari and he didn't even give it a second of thought. I am in contact with the Chiari Institute in NY... hopefully I can get some answers soon.

Thanks for reading... and replying...

[jpurple]

I tried Neurontin once too and didn't help and I can appreciate the doctor treating your pain as "migraine" and not chiari.  I was just prescribed Topamax which i am not taking until i hear from my tci doctor.  

[selmaS]

To both of u....I too was RX'd Gabapentin.....it really affected my IBS issues and took over a yr to calm it all back down...only to go into surgery and all the drugs set it back off...ugh.

But, it didn't do nething for me symptoms wise either.

"selma"

[Frojenn]

I have been prescribed Gabapentin.. basically the generic form of Neurotin. I found the side effects were worse than the Chiari so I stopped taking them quite quickly. I have contemplated taking them at night so I dont feel the side effects.

I will let you know if & when I decide to do that & if there is relief.

[CB1122]

So my shooting pains just started this morning. At first it was just in my hand and it was a shooting pain that would quick but gradually intensify in pain then go away, but would come back minutes later. Then I started getting it in my ankle... then my toes... then my knee.... and then my neck. It seemed to just keep rotating from joint to joint.

Sooo weird!

I don't describe this as an electric shock because I have had an electric shock feeling and that I feel more of a zapping pain like electricity (compared to being electrocuted when changing a broken light bulb - not fun) I get that sometimes when I sit on the floor funny and it shoots down my legs. Sometimes I get it in my toes with certain sandals or if I am running around. It is rare, but it does happen... never mentioned it to a doc though

[taylapj]

The shooting pains, is what i describe as 'electric shocks'  

Are they random for you?

[CB1122]

Thanks for your reply - sometimes I really do think I must be crazy or stressed so its nice to have people actually acknowledge me and understand because they've been there too -

Today's new symptom: random shooting pains in the joints (fingers, knee, ankle, toes) on right side of body, similar pain to what I am feeling in my neck

[*Stormy*]

I have to agree with frojenn and Kim60...you sound like you are progressing like I did as well. Especially with the base of the head pain and the leg weakness (knee buckling etc). I noticed this earlier on and chose to ignore it b/c I was being told it was stress, fairly quickly it escalated and severly affected my gait. I don't want to be scary, just truthful.

So really push in the direction of TCI!!! To me, these are signs that things are getting worse and if you are contact with TCI, I would even email them and tell them about these new symptoms. It might bump you ahead on the list.

No meds either b4 or after surgery seem to be helping the neck pain much...I have been told what I really need to do is start rehab b/c the theory is that it is damaged weak muscles that can't hold up my head so then the spasming starts and that's why I get the pain. Rehab wouldn't be an option for you though until you deal with stopping the CM progression. I am on Amitriptyline and it may be helping a little..but not enough..may be something you want to try though.

Good luck
Carolyn

[Kim60]

You're not crazy.. I had most of your symptoms come and go since November.. some days they were really bad.
The pressure in the back of your head/neck.. that WAS a constant issue with me that drove me crazy.  I had surgery 6 weeks ago and I must say that is one of the symptoms that has gone away (fingers crossed)!  I hope you get the help you need from TCI and your days get easier.  
This is such a weird disease that I never know what to expect.. I'm just happy I'm feeling better and surgery definitely seems to have helped me.  Still home recovering and taking things one day at a time.
Best wishes with everything.
Kim in NH

[CB1122]

oops - I meant to say the meds AREN'T helping... but I think you got that :)

Thanks for the replies... this neck/head pain is really starting to wear on me... do you/did you take medications for this?

[Frojenn]

Hi

Your symptoms sound like how mine started & still are. The more Chiarians I talk to, the more I'm hearing the same thing.

I'm glad to hear you are going to get further testing etc. please keep us updated.

[selmaS]

Hi...all ur issues sound familiar....u r not crazy,. and ur dr mis informed!

Many of us had the throat issues...a raspy voice is also a possibility from chiari...try to sing...I didn't have a voice...no sound would come out...never told the dr, for the same reasons, but later found it is a typical issue with chiari.So do not hold back, if the dr looks at u weird, it is his issue, not urs.

I also went to TCI, loved my drs up there. IF/when u schedule an appointment ask about getting to stay at Variety House...it is a more affordable way to stay on LI.

"selma"