Headache will not go away
 

Hi there, does anyone else find their headaches are worse with the SCS running?

I suffer from cluster headaches and have done for years. I get auras and know those signs point to a migraine settling in. Now of course since 2012 I live in fear of them leading to another grand mal. This particular headache has been non stop since I had the SCS put in. I have tried turning the stim off and it has abated somewhat but never gone away. I told my GP I will never take Xanax again so she has prescribed Valium instead and twice now I have had to take up to 15mg. Bizarrely oxy never touches the headaches at all. I take Panamax every 6 hours as well. I'm beginning to wonder if I have what's called "exploding head syndrome".

I will book a long appt with my GP to complete the required paperwork to go back to my old psychologist, she helped me get back behind the wheel and drive again. Before seeing her I couldn't even walk down a one way street let alone drive down one. My car accident was in a one way street. I think with me not working and driving every day, my anxiety levels have increased and I have dreams every single night about working, going for interviews, getting the job and in the dream I can feel this palpable anxiousness and I wake up feeling drained. Wondering if this is also contributing to the nonstop headache.

Dear PamelaJune

Just a question
My eldest child Saraeve
headache would increase in pain
sometimesit could take two weeks
Bam a seizure hits
then after she would say her headache
popped
When you would suffer one did you recognize
if the headache was gone?

Sending lots of hugs and an end soon
to all the pain

Eva, It just might be true
 

On the morning after the first seizure in 2012 I had a blood patch done at 7am. I have to this day thought it was the blood patch that made the headache go away but looking back at it now, perhaps it was the seizure itself? I was very disorientated for many hours after the seizure. It happened sometime between 7 & 7.30pm but I have no recollection of anything until after 10pm when I "came round" and was complaining of heart and back pain. The crash cart was still there and they were doing an ECG. I asked the nurse to call my husband and she told him I had experienced a "panic attack". I remember that clearly, she then said to me "oh good you are with it, now I can go home", my PM had them administer Valium and sleeping meds and I recall nothing else until my PM came to see me shortly after the blood patch and I said the headache had gone. In December when I had the next big seizure I have a vague idea the headache had again disappeared, but once again I was disorientated. My friend had taken me to the hospital and then my sister and husband turned up. I have no idea how she got home from the hospital, nor who took me home or how my car got home?

I just wish the headache would go, it is unrelenting and it worsens with the persistent thoracic region spasms. I find myself with my shoulders up around my ears and I'm consciously telling myself to lower my shoulders and relax. This life, I'm totally over it. So many things I want to do, I want to paint the toilets, laundry and bathrooms, I want to sew and make 3 "Laura Ashley" patterned 5 old pillow holders that fold out and form a sort of cushioned bed lounge seat for the children to sit on when at my mothers so they don't ruin her good settee with food grubby hands. (The kids are 2, 6 & 12) very well behaved one on one but the 2 & 6 yr old together refuse to behave well. I want to oil the deck and outside furniture, I want to walk my dogs and I want to return to work. None of this I can do, but only 2 years ago despite suffering constant back pain, I could do those things. I lived a full life and refuse to believe I can't do these things again.

I do wonder if it's true, have a seizure and the headache will go away? I realise now I've been having little seizures for years but they were never recognised. I would have these moments where I "lost time" only a few seconds and the only way I could explain it was as if my brain had slipped sideways in my head, as if it were a skiff bobbing about in the water and suddenly slipping away fast in the breeze and it took a moment or two for the rest of my head to catch up. It happened most often at work, (no surprise there, I worked up to 70 or 80 hours a week) it happened once in the car driving into the Milton Keynes car park and on rare occasions when at home. If I were standing or sitting, I would often find myself flinging both my arms out to either side to get my balance as if I were falling, often accompanied by a cry from me "wooh"

All my working life I used to say, "oh it would be lovely to not have to work" now all I say is "oh it would be lovely to go to work".

I hear you loud and clear
 

My daughter also suffers aura at all times
she also is disorient after a grandmaul seizure
Her gait too is off
Do you notice the dogs behave differently
just before a episode
My daughter takes many different Meds
for her seizures one of them
Clonasapam
Klonopin
Both of them are spelled incorrectly
for the anxiety
pay attention to the fluorescent lighting
we do not see the flickering
a no no for seizure patient
I am following as you share
Keep up the strength you also
have
And you inspire as my daughter is my Hero
What she went through is tremendous
This community we are in is a blessing in so many ways
You be well
Wish you a belly laugh
That always feels so good
Be well

Non-stop Headache
 

Pamela I feel saddened to know you are carrying this non-stop headache monster with you.... I had non-stop headache due to head injury from the wreck and it lasted for months, then abruptly stopped. It was not stim caused as it preceded the stim by five years. I would not have replied due to the dissimilarity of our situations, but just wanted to weigh in to offer up hope for a tomorrow without the headache pain.

Prayin it will all be well and whether causation be isolated or not that it stop.... just stop. :hug:

Nonstop
 

Hi Mark and thanks for the weigh in, yes I have had the headache long before the SCS implant, just post the car accident, but of course it was never picked up that I hit my head against the side of the car door until I began CET with my psych, some 4 years post the accident itself. I just wonder if anyone else feels the SCS adds to it.. I'm just feeling very frustrated. I'm trying so hard to find positives and want so much to do things, until I get answers to the things that are troubling me, moving on just seems that much further away. I guess my SIL comment about meaningful has stung more than I thought!

I'm sorry . . .
 

I'm so sorry for your unrelenting headache - I had a migraine once that lasted for nine months and I was miserable - I can only imagine how frustrated and "over it" you are after having been in pain for so long.

I honestly don't have any helpful thoughts or experiences, but I wanted to let you know I'm praying for you. I understand the desire to just be able to DO something again. My want-to-do list is so long, and every day I wake up determined that today will be the day I make some headway . . . I usually don't, but I start out every day with the best of intentions. I think that is the key for me - to keep hanging onto the hope that "today" will be different.

Praying for pain relief for you today. :hug:

=Becky

I can't think of any reason the stimulator would exacerbate the headache unless it's directly affecting the same nerve, or working well enough that pain is seeking other avenues of perception.

However I can speculate that the stress of the whole life-changing event of getting the stimulator could exacerbate the headache—even if the stimulator is relieving pain elsewhere. It's a big change, and big changes are/can be stressful.

I'll defer to the experiences/opinions of the experts on this.

Doc

The never ending headache has returned with a vengeance. I'm thinking I'm bound for a seizure. So does my GP. Why she didn't refer me to the neurologist I saw in 2012 is beyond me. Perhaps she thought I would go to the hospital as she suggested. Only GP's don't understand what it's like to go to ER as a chronic pain sufferer, we are labelled drug addicts. The only way to get decent treatment in hospital is to be referred & admitted under a treating specialist. Going armed with a letter from my GP will have seen me sitting in the waiting room for hours on end with no help at all and more importantly no access to pain relief.
DB is suffering severe depression and anxiety, he's curled up in the foetal position. I'm unwell, I'm in pain, but I've done the washing and now I have to yet again do his dogs welfare. He has this week off. I've suggested he go to a wellness break. NO was his answer, I got quotes to give help round the house. NO. I'm at the end of my tether, my dried up tears have found their way back I'm crying as I type, I don't think I want to live like this anymore. I can't live like this. DB thinks giving up alcohol was going to wave a magic wand and make life bearable for him, he's realising with or without alcohol he is a depressive. Maybe as I've long suggested bipolar. It's like living on the edge of a merry go round up and off of the eggshells down and the eggshells shatter. Only it's me that's shattering. He's sucking me dry, my every living moment is spent supporting helping him. I can't see the point in living like this anymore at all, my family couldn't care less about me unless they want something, DB only needs me to care for his needs, the animals need me to feed and clean up after them. I'm just a slave to everyone else but if I mention it, I'm a terrible selfish person. I've been a slave all my life trying to get my mothers approval and love, now I see the pattern with DB I'm a slave to his every whim and temper. Why is it people only want to know you when you are well and happy. But when your not they disappear like dust bunnies into the corner of the room. My head is hurting terribly, I feel disconnected and sad. Sorry everyone .

Feel quite ill with the headache, going to bed. Have to be well enough for work tomorrow. Say a prayer for me xxx

Pam, you may have come up with an area that needs looking into... DB being Bi-polar.... Would be good for both of you if he would look into getting diagnosed and treated.

Always in my prayers...


Gerry

Headaches are receding but I'm experiencing increased aura type symptoms. DB calls them spinnies, the only way I can describe it, and have done for many years is to say, it feels like my brain is a little boat floating about on the water and a sudden wave makes the boat tilt and bobble madly before settling again. It's very disconcerting. I used to get them a lot when we lived in London and I had a very stressful job, only now they seem much more pronounced, but it's probably just me noticing them more. The other aura is smell, I experience strong foul smells, when I had the last grand mal it was faecies I kept asking everyone if they could smell poop, checking my shoes and those around me to see if anyone had stepped in doggy doodo but no, it was just my noggin playing tricks on me. This time round I can smell urine. I think I'm going nuts!

There is good news though, I'm not gobbling Panamax every 6 hrs, I'm down to 2 on occasional days. Now I'm off to wash my hand n feet again along with another load of washing to deal with the imaginary urine stench!!

"I'm a terrible selfish person. "

Pamela, I hope that it is OK if I offer you a respectful challenge about this.

From everything that you have shared here you are an honest person. But, as far as I can see you are about minus infinity as far as selfishness is concerned.

You do a lot of domestic tasks around your home. You care for DB. You care for the members of his family. You care for your dogs.

I see a pattern there which is that you are a completely non-selfish person :hug:.

That is good that your headaches seem to be improving - I hope that this continues :hug:.

DB reminded me when I was having the spinnies a lot in London, I was on the amytriptaline (endep) 25mg. I stopped it due to it causing me tremors. I wonder if the endep was contributing to the spinning sensation & is again contributing to them now? I have a distinct memory of the spins going away but never considered endep to be the reason.

Question - Anyone else out there on amytriptaline (endep) suffered with a spinning sensation, it's a lot like vertigo but I don't get the associated nausea so I'm lead to believe it's not BPPV.

Pam, I've been taking Amitriptyline which is a generic for Elavil. It is a tricyclic antidepressant. I think maybe universally it may also have the name endep. I started many years ago taking as a preventative for migraines. My migraines have not been as bad as they had been years ago. The one thing that really starts them up is when I have had steroids; especially the injections.

The Amitriptyline (Elavil) also helps with the brain receiving pain signals which is why I use it now. I use to take a 25mg. but have been cutting the tablet in half =12.5mg's. I use it every evening before going to bed. It does produce some sleepiness as well. It takes a while to get into the system. I don't recall any spinning sensation or anything you have described.

I am glad to learn the headaches are calming down. Hopefully whatever is causing these other symptoms will "just go away". The odor smells is something I haven't heard of before. Poop and piddle smells; not nice.



Gerry

I've had that. They are called olfactory hallucinations. Mine were of something burning. They seemed to be associated with epilepsy and migraines. Haven't had any for quite a while. BUT the spinning and dizziness I've had for about 5 days now but it's going away. Came on very strong around the time of my last migraine, 3 nights ago. Today I didn't have it at all.

Thanks Wiix, I will google it, I have a vague memory of the term olfactory hallucinations but I know nothing of them. My headache today has returned and I had a really funny turn just before mid morning where my legs turned to jelly, my heart was pounding and my head felt really light. Lasted for about 30 seconds. Had to hold onto the wall.

My dear sister
Your seeking for your mothers love
Oh how you touched a nerve
I have given up
It wasn't to long ago
She told my baby sister
She was never wanted by my mother
She was scheduled for an abort
My father interspersed a confirming call
Done
So done

I mentioned to you my daughter would also have aura in smell form
Hers was a smell of bleach
Soon after she would suffer a siezure
Sometimes it would be in the back of her throat

Headaches a big time sign a seizure was going to happen
Hers would increase in pain until migraine material would lingers for a short while and then she would say her I go and sure enough a seizure
She would tell me her headache would pop
after a seizure it would be gone just like that
This is what I hear you describe
Praying for you
I so understand
"This is not a way to live"
A slave I too allowed myself this kind of behavior not any more it hurts withdrawing from the ones we love to death
Something I had to do
I would hurt more with them in my life
How can that be
But it's my life
Hold on dear sister
Hold on
With each breath we take is our destiny final destination to be with Heavenly Father
Oh how happy we will all be
Love
Me

P.S. Along with aura i the sense of smell is just one of her auras
Along with the above she has constant visual aura hers she says is like a kaleidoscopice she will always have them
The way she controls her seizures is with. VNS implant wears a magnet on wrist watch like when she feels one coming on she waves it over the VNS above left breast and what this does is reboot her brain
Yup
Reboot the brain
Her vocals are temporarily affected very raspy
I feel all you pain
All of IT!
Paying attention

Having four babies
Now adults
They were very healthy when growing up it wasn't until they were in their twenties
They all have something going on brain related
My boy suffer bi-polar in the worse way
Very afraid for him
Addiction highly prevelant
Went through so much with them
So much physical pain
They all have amazingly brilliant minds
All suffer migraines
For my girls during menses would be heightened
Just so amazed at what the body can and cannot do without the brain
Thanks
Me