Relief from huge crash

[littlebird6180]

First, I feel like I've posted a lot in the past few days asking for help so apologies. But I'm experiencing one o the worst crashes I can remember. I was doing so well in november and part of december and then a few things happened:

• I had costochondritis for about 5 weeks but other than the chest pain, I felt the best I've felt in years
• then I got a mild cold
• I developed a 7 day violent migraine that had me hospitalized
• Shortly after that, I got the flu
• I recovered from the flu and went to the women's march in DC and definitely pushed myself physically
• I got botox for migraines one week ago

Since I got back from DC on 1/23, I have been in a lot of pain with muscle aches. My body is so extremely tired. No stamina. Brain fog is at an all time high. And since I got the botox, everything seems even worse with the addition of terrible eye strain that's making it almost impossible to work. I put in a call to my ME doctor but probably won't hear from her tomorrow.

Has anyone done a course of steroids for a big crash? Has it helped? Anything else that's helped?

 

[Valentijn]

@littlebird6180 - Can you take some sick days and give your body some time to recover?

 

[littlebird6180]

@littlebird6180 - Can you take some sick days and give your body some time to recover?

Not really. I work for myself but am about to launch a new startup and am on a very strictly scheduled budget. I also have two little kids. I am more flexible with my hours and can take it somewhat easy during work but can't fully take a day to just lie in bed. Although, I will try to do that this weekend if I'm still feeling this way and my husband will take the kids.

 

[Hell...Hath...No...Fury..]

I'm sorry to hear you've crashed so badly. Have you had botox before? Its the one thing i haven't tried for migraines as i'm concerned about its effects on the ME. People at my migraine group are 50/50 in favour and against after trying it and they don't have the ME as an additional consideration so i'm completely torn on the subject.

 

[littlebird6180]

I'm sorry to hear you've crashed so badly. Have you had botox before? Its the one thing i haven't tried for migraines as i'm concerned about its effects on the ME. People at my migraine group are 50/50 in favour and against after trying it and they don't have the ME as an additional consideration so i'm completely torn on the subject.

Yes, last year I used it every 3 months for a year and it was a lifesaver. I'd been having migraines 2-3 times per week and none of the old medications worked for me anymore. Botox was my last resort. And it gave me an entire year of no migraines. Then insurance stopped covering it so I had my last injections in june 2016. This was the first time I've had it since then and it was a new doctor. So, I don't know what that says but I just know my body enough to feel confident the eye strain is definitely related - not sure about anything else. The good news with botox is it wears off in 8 weeks - not that I want to feel like this for that long...but at least I know it's not forever.

 

[Snowdrop]

I hesitate to weigh in on this as obviously we are in serious need of proper meds. And maybe you have tried this and so many other things but I'll throw it out there for you. Do you get enough water and salt and electrolytes?

When I've had intractable migraines it's helped in the past when I've had the hospital administer a bag of vitamins and saline. Now I'm really careful about using sea salt (a lot) and taking minerals and drinking a lot of water in addition to vitamin C.

As for the crash, beyond rest, I wish I knew.

 

[Gijs]

Maybe this is a bad reaction to the botox (?). Drink a lot of water and take vitamins.

 

[littlebird6180]

I hesitate to weigh in on this as obviously we are in serious need of proper meds. And maybe you have tried this and so many other things but I'll throw it out there for you. Do you get enough water and salt and electrolytes?

When I've had intractable migraines it's helped in the past when I've had the hospital administer a bag of vitamins and saline. Now I'm really careful about using sea salt (a lot) and taking minerals and drinking a lot of water in addition to vitamin C.

As for the crash, beyond rest, I wish I knew.

Thanks for your input. And yes, I take salt pills and other electrolytes regularly and drink water like a camel. I've also increased everything slightly lately to see if it would help.

 

[Snowdrop]

Yeah, I thought you'd probably already tried that. Sorry to hear that nothing short of botox has helped.

 

[Mel9]

I was taking dexamethasone for bad Herx reactions to antibiotics for Lyme disease (Borrelia) infection. As I my herx reactions feel identical to my 'crash' times, I tried taking dexamethasone for these too and was very pleased to find they worked.

But the side effect (moon face and weight increase) have me worried so I stopped.

Good for an emergency situations though ? (When you really cannot take the time to lie down for days) What do others think?

 

[belize44]

I know that for myself, I can no longer stake steroids without it raising my BP to scary heights.

 

[littlebird6180]

I know that for myself, I can no longer stake steroids without it raising my BP to scary heights.

that's scary! i guess my BP is already so low (90/60) that I'm not that worried about that side effect. Still waiting on a callback from my doctor. But I feel so sick like I should be hospitalized. I was unable to work at all today but had my daughter home sick so didn't get any rest. I can't remember ever crashing this hard and am actually feeling scared at how bad I feel. I'm wondering if I'm having some sort of toxic reaction to the botox.

 

[belize44]

You never know! I used to be able to tolerate Prednisone, but as I said now it causes my blood pressured to spike. The trick is to avoid salt while on a course of steroids, I think. Some things that I have always been able to tolerate have started causing me trouble now. I hope you get the answers you seek.

 

[vision blue]

I was taking dexamethasone for bad Herx reactions to antibiotics for Lyme disease (Borrelia) infection. As I my herx reactions feel identical to my 'crash' times, I tried taking dexamethasone for these too and was very pleased to find they worked.

But the side effect (moon face and weight increase) have me worried so I stopped.

Good for an emergency situations though ? (When you really cannot take the time to lie down for days) What do others think?

Do you have a thread where you discuss dexamehasone? am curious but I don't want to hijack this thread.

 

[digital dog]

What drugs were you given for the migraine and illness? Perhaps you have reacted to some drugs given during the time you were sick (antibiotics, benzos etc)

 

[littlebird6180]

What drugs were you given for the migraine and illness? Perhaps you have reacted to some drugs given during the time you were sick (antibiotics, benzos etc)

Botox for migraines but during the 7 day migraine I was given everything under the sun at the hospital to try and break it. I was also given steroids and antibiotics before the migraine for the costochondritis.

I just spoke with my ME doctor. She thinks that with the back to back illnesses and then wearing myself out at the march, the crash is easily explained. She had also started me on P5P so asked me to come off that because I could be having negative side effects. She said that the botox could be causing the eye strain I've been having and if I hadn't mentioned the botox, she'd be much more concerned about the eye strain (in combo with my hand tremors). I asked her if I could possibly have MS or something else and she paused and said it wasn't ruled out and with my more recent symptoms, I needed to have deeper evaluation.

I'm just feeling really sad and scared. I have two incredible young daughters who don't deserve to be burdened by a parent as sick as I always am. Every time I feel like I'm getting better, another setback comes along to humble me and remind me that I just can't live a normal life.