Anybody lost the ability to lay down from pain?

[bensmith]

I think my head pain is possibly going to not sllow me to lay down soon. I am bed bound so need to lay down. I bougjt a wedge. Hope that helps.

anybody, esp severe folks, lose the ability to lay flat? Any advice or how did it go? I get tired from sitting up.

 

[xebex]

Sounds like intracranial hypertension have you looked into that?

 

[bensmith]

sorry i havent. I will try thanks.

and sorry but is this another issue now seperate from nueralgia

how can this all be happening.

 

[Wolfcub]

I am sorry @bensmith This situation is no fun. Are you okay with a wedge? May have to adapt.....whew....we have always got one more thing to "adapt" to

You do need to be able to lie down. You can't sit up all the time. Going halfway to lying down, if it doesn't trigger the pain, is better.

I have had to raise the head of my bed six inches recently (using old books that no one would ever want to read! Like DIY/plumbing books etc from the 80s), and I always liked to lie flat. But mine is for another issue. Not the same, and not pain. Just my stomach playing up. I never thought I'd adapt to it, but amazingly I am comfortable that way.

I hope your head pain goes away or eases up in some way. Is there any way to ask a doctor remotely?

 

[bensmith]

Thanks. Hope i can adapt too. Its sappingme.

i saw doctor yesterday and she punted to neurologist in a few weeks. Thought that was very cowardly. I wanted to try meds its very painful and scary.

i want to go to er im so fresked out from pain but i know it wont help.

 

[Wolfcub]

i saw doctor yesterday

So....did she think this was NOT an emergency situation? So the attitude was "live with it for....

and she punted to neurologist in a few weeks.

....a few weeks??
And didn't even offer you any pain relief or any explanation of why you might be feeling that pain?
Is there anything OTC that helps, which you can tolerate?

 

[bensmith]

She said go to er if you need to. : (. I kept asking for meds but she dwoiksnt give me any. She said she woild t give meds without knowing what it was : /. I shoild t have said inwas foing to see neurologist.

I took some alieve but nothing there. I can eat spicy food and it helps but its crashing my cfs.

 

[Wolfcub]

I kept asking for meds but she dwoiksnt give me any. She said she woild t give meds without knowing what it was : /.

So basically she doesn't know what it is. Of course, because she's not a neurologist. But then she says you have to wait WEEKS to see a neuro. So the message behind that is.....stay in pain for weeks. Oh boy....

I think if it gets terribly bad, ER might be a good plan, Ben. It might end up with no clear results, but you would probably get a scan and some meds that way....possibly? Much quicker than weeks.

 

[bensmith]

@Wolfcub i kept asking her for meds and kept saying the pain was very bad but she would t budge. I dont agree with it at all its bad. She said that she djdnt want to hurt me or cover up pain if its somethhing bad. I thought it was pretty cowardly.

i have some left over gabapentin but it crahsed mt mental healthX. Like sucide delressuon mania for days after takingnit.

i really want a first line treatment like
Acetazolamide


or dilantin maybe. But would the er give me those you think?

 

[Wolfcub]

i really want a first line treatment like
Acetazolamide


or dilantin maybe. But would the er give me those you think?

Gosh, I don't know. The ER in my country is a lot different to yours, and it's a long time since I went to ER. I have honestly got no idea what they might give you. It's difficult with the drug sensitivities you have. Not all ER doctors might understand that.
I guess the best thing you can do if you do need to go to ER, is start writing down, now, on a paper, the reasons you can't take certain meds. And which medications help, and you can tolerate.
Keep it brief and simple. If you have to go, take the paper with you. Because if you were taken there, it would be easier than trying to fully explain verbally in the heat of the moment.

 

[bensmith]

@Wolfcub good idea ty. Yes medicine is non existsnt in the us.

 

[Wolfcub]

I'm not sure how ER works nowadays. I haven't been there for....decades.
The meds we have here often have different names too.

For your head....do cold compresses help? Like a cloth soaked in ice water and wrung out, or something? Sometimes that helped me a LOT with head symptoms.

 

[Wolfcub]

I'm going to have to go now. It's 2am and I should sleep. I'll be back tomorrow. I hope you will be alright @bensmith If things get terrible, don't be shy and go to ER. Otherwise, hoping you find a little peace and some sleep tonight.

 

[Wolfcub]

How are you today @bensmith ? Do you feel any better or the same?

 

[bensmith]

@Wolfcub in feel a bit better today thank you! Issues calmed down a bit enough that i fot to sleep a bunxh : )

 

[Wolfcub]

I am glad to hear that @bensmith Sometimes I get the same. It's like a storm kicks up and I feel scary, symptoms get worse....yada yada.....feel like I haven't got long in this world, make my peace....ready to go....then the storm eases, and the wind drops so to speak, and then some rest comes. I do understand.
We are tossed about like a rubber duck in a bathtub sometimes!

 

[bensmith]

@Wolfcub yes! Thanks for being understand, its such a weird thing to experience! Its strange too because the world is fine but youbare in a storm, like a rubber duck indeed lol.

 

[Sophiedw]

Hey @bensmith could you possibly buy yourself anything stronger on the internet if you were desperate? Glad to hear you got some relief today. Can you think what might have changed?

 

[bensmith]

@Sophiedw sorry stronger what?

i dropped my salt intake. I think i have iih. It helped a decent amount i think, in day time. Mornings still dicey.

prob just luck thiugh lol.