Botox made it worse help

General
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I had a SAH in July 2014, I’ve suffered constant head pain since. Some days are worse than others. I’m sensitive to weather changes, I’m a human barometer, I can tell the difference between a t8, t11, t5 florescent light just by how much it offends my brain. I suffer pain entering and exiting the car or house because of temperature changes. I require that my family members wear headphones to listen to music or watch TV because the background ground noise is unbearable.

Topamax has helped me function a bit better and tolerate the noise to a degree but not enough so my neurologist suggested botox. I went and got the injections Friday and aside from the pain of the needle pricks it sent me into the most horrible feeling almost immediately. I felt irritable, dizzy, agitated, my head hurt and I just wanted to cry. The next day I woke up feeling the same, I tried to relax but as soon as I tried to explain my discomfort to my partner I just started crying and couldn’t stop. He took me into emergency where they did a cat scan and gave me some medicine to calm me, I can’t remember what it was, but it made me sleep.

Today my head still hurts, I’m back to being a hermit locked away in my room where it’s quiet and dark. I spent the first nine months after the SAH this way, I have spent over a year struggling to be a normal human again, now I feel all that progress was lost after one treatment.

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I'm so sorry, I haven't had any experience with Botox. Other people here have, so I hope you get some answers.

Sherri

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Hey Gimp,

I too have tried Botox 3x and I won't be doing it again. The agony of the actual treatment was beyond belief, and woman get that stuff put in their face regularly?, like WTF, they must be sadomasochists. My neurologist told me that for cosmetic purposes they often have a local anaesthetic. Ive had shots put in my forehead, neck, shoulders, back and face. The headaches post treatment have been chronic and the end results have not improved my daily headaches at all. My understanding is that Botox is great for tension type headaches. I do not believe my headaches are tension related and are more likely related to the 6 surgeries I have endured, but trying to get a neuro to admit my continuing pain is surgery related is near on impossible. "Ohh it's nothing we have done, it must be YOU..."

They told me that the first two treatments may take some time to work, but after the third round of 30+ injections they relented and said that they doubted any further treatments would be of any benefit. I just wish they had come to that conclusion after the first round.

I too find too much stimulation overwhelms my senses. I do try to ignore it and just push on through, but I pay dearly for doing so the following day. For me its all about management, pain management, medication management, activity management, stress management.........aahhhhhhhh.

I hope you find some relief, somehow.

Merl

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Gimp... under the 'Success Stories' below has "Botox Injection a must' by Ronnie...

In addition, my acupuncturist would not treat a specific scalp/skull area apx an inch behind my left ear...until a neuro checked it out...Thus, I sought care of a "2nd opinion" neurosurgeon / leader of that facility's neuro-unit... He did suggest a Botox (TG, I had a friend advocate w/excellent memory)...

I could only remember my mother teaching me/sisters, to bring canned green beans to a boil and simmer for 10 minutes to assure there was no botulism... thus, I had more confidence in my mother... and, would not get a Botox ..

As it turns out, one of the coils had been detached where it entered thru the sphenoid bone ... which is the bone that provides our eye sockets, sinuses and the sella turcica... the cavity holding our pituitary gland.

Oddly, the term "sella" was used on a specific x-ray from the initial neuro-doc involved in the coiling and stenting... vs just noting "x-ray - head"...

Some of us off this site have shared our 'procedural" story formats...and, is becomes so interesting to track the rhetoric and ethos... and easy to determine who had adequate to quality care...to so questionable..

Gimp, this is my 13th year...and, a # of things have improved ... others are not... like the extreme visual field deficits (both eyes...tho, my right, the worst)...and, hearing loss ...both left and right - again, my right ear, the worst... and much more to that story...

I also had my initial neuro-psych tests...which tests reflected my "reading ranged from 2 years to 13.8 years) ...Two weeks prior to this testing...the 'speech therapist' ..hospital/PCP arranged care...provided a "3rd grade" level crossword puzzle a/w/a more stories to the psychologist who would be doing the neuro-psych testing... I am yet not able to read some of my own writing on those papers...

and, two weeks later...that same hospital's 'internal rehab' signed the form for me to take my 'driver license tests"... which brings up another over-flowing story... for another time...

I have been wearing long-johns apx 10 months per year...have two comforters... a heavy down; the other is a heavy silk... (found at my Costco)...and, wear long-johns under my pj's...when I get too cold, my left body shivers to the point, one doc, sent me in for EEG to determine if seizure related... it was not seizure related... I was also blessed to have a grand seat warmer in my car...however, I quit doing a lot of things during the cold weather...like going to theater and other restaurants, etc..(besides not liking the noise)...

Conversely, I barely sense sun warmth unless it passes 80+ degrees... If you've not experienced that...please be careful in any of your first sunny days... I was burned so badly, I saw my PCP....when I did not even feel the sun...I was one, able to hike / golf, in dry or humid 85-105 degrees - all my life..

As for your vision reaction to light...I have the same major issues...and, maintain a close connection w/my eye doc...who makes the decision on referrals to specialists... A critical issue...is which (blanking on proper names) of the lens blockers... the best name of one (my opinion) is the Maui Jim ...or a specified equivalent...on my sunglasses...and, then I can not remember name on my regular glasses...

I have put 65-70 watt bulbs in all my lights...

I have spent 13 years w/attempts to live normally...I had lost my "reading-comprehension" and "learning to memory" ... thus I yet live in accumulated squalor... Anyone arriving would think I was a crazy lady and/or a demented one.. I am in the process of reviewing/comparing data on dementias...which I began November 2015...and, have not yet completed...but everything we attempt in recovery...still includes shower/shampoo, laundry, groceries and eating...and, I have so many stacks of paper...this morning I came across some dated 2014 on vision and auditory....I will be posting some of that here.. because my search began with" 'cognitive impairment...compared to dementias"... and, the Mayo /clinic does include in the known/renowned dementias...as well as a list of: "dementia-like conditions...that may be reversible"...

and I have a lot more data on that from terminology on some of my med records which are on the Mayo list... When I better understand that, I will post more here.. .

Securing your med records is generally quite costly; however, many (most all?) will provide CD/DVD of all the angios, CT/As, MRI/As...that may be of help...depending on whether they include the story-formats of those...the programs used for this can vary by the providers of that to the hospitals.

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Gimp...that's the longest page I have ever typed here...