Brain and Neck disabiling symptoms...

[Smiley1007]

I recently went off of clonazepam and nortriptyline in jan.  Been off for 5 months.   Now experiencing these symptoms everyday: head pressure, muscle tension in neck and head, (mostly at skull base), heavy head, numbness, feels like fluid in the back of head, all worse when sitting up or if anything touch the head or scalp (hat or pillow etc),dizziness, extreme fatigue, unrestful sleep, muscle weakness, blurry vision, unable to nap at all, no emotions, some anxiety...Im mostly worried about the head pressure and tensioner in the back of my head as it keeps me from living my life, im currently housebound.  Ive had 2 MRIS of the brain and 1 or the cervical spine, heart echo, stress test, ekg, GI tests too.  ALL was negative.  Im so stressed at this point nothing helps.  Ive seen therapists and and they stated this is no typical anxiety. Im in no pain literally however these symptoms are disabiling.  Does anyone have any insight on this at all?  Ive seen 2 neuros and these issues did not start until the abrupt stop of the meds.  Could this be an aneurysm, blood clot, tumor, or some oyher neuro disease that the mris missed?  Please help me.  

[sara12345]

I'm so sorry to hear about your continued health problems.  My withdrawals symptoms were that I decreased the pill a bit at a time.  Each time I decreased it, I would get a severe depression that lasted about 2 to 3 weeks, then went away.  Then after feeling fine for a few weeks, I would take off a little bit more of the pill, and again have severe depression for 2-3 weeks.  If I had gotten off of it any faster, I think that I would have had to be hospitalized.  Then I think, as well as I can remember, it took 4 to 5 increments down to finally get off of it.  But I was so much happier while I was on it, than I had been before ever taking it.  

Now I must take it every night to treat involuntary jerking (Myoclonus) caused by my stroke. But I no longer have the frequent, sudden completely irrational major anxiety that I used to have.  Plus, there was always a dull roar of anxiety about everything or nothing.  I still wonder if maybe your symptoms are from anxiety.  I really don't know. So sorry.
Sara

[Smiley1007]

Thanks for responding.   Im not on any meds as im afraid to take any meds now.  I was completely healthy before this with only some headaches and sleep issues.  Not sure why they tokd me to CT the meds both at once.  I know im probably screwed up.  Do you remember what some of your withdraw symptoms from clonazepam were?  How long it lasted.   Docs keep saying it cant last this long but after all this testing what else could it be.  This is so hard.  

[sara12345]

Thank you so much for your understanding of my pain.. My symptom was a characteristically different migraine that no pain medication would help for 3 weeks before I had the full stroke.  You can look up stroke symptoms to see what other symptoms can be.  But it's unlikely with all the scans that you have had that you will have a stroke.  

But something is definitely going on with you.  What treatments has your doctor given you for the migraines which can cause a lot of other weird symptoms besides head pain?  Also depression can cause stress plus a lot of other symptoms which your Nortriptyline was an anti-depressant.
If you are still having a lot of stress, what about taking another anti-depressant or an anti-anxiety medication?  

I'm wondering if going off those 2 meds cold turkey could still be affecting you.  It seems unlikely after this much time, but it took me months to go very gradually off the clonazepam years ago.

Let me know what treatments you are receiving now. It seems like you need something.  Good luck.

[Smiley1007]

I read your story and I wanted to say im sorry for your suffering.  I know it has to be extremely hard for you.  Pain in intself is torture.  May I ask what your stroke symptoms were?  I fear I will have one due to these daily symptoms imhaving...tthanks for helping me.

[Smiley1007]

I went off the meds because they were making me sick.   I was originally put on them for sleep.... it feels like im dying everyday although I've had so many tests done.   Doc keeps saying they are migraines but I've had those and never felt like that. ..

[sara12345]

No, no, no, the MRIs would have told you if you had anything serious.  It sounds like your anxiety is full blown which clonazepam is an anti-anxiety medication. Why did you go off the medication?  It is always a very bad idea to go off of these meds abruptly.    

It sounds like you are quite disabled from your side effects. It could be that just going back on at least one of your meds, such as the clonazepam could greatly help you.  Why don't you ask your doctor for something to treat your muscle tension and other symptoms.  Wish you the best.