Third day straight of migraine:

[succor]

Along with a whole host of physical disabilities, I also get cluster migraines. They come in batches that last for days at a time, and then they go away for maybe a week if I'm lucky, but they always come back. Even my emergency abortive medications don't always work, like today.

I don't know how much longer I can stand the chronic pain. The migraines render me absolutely useless, I can't see out of one of my eyes, half of my face feels paralyzed, my speech gets fucked up, the half of my body that the migraine is on feels sluggish and heavy and is hard to control, it ruins everything. I was supposed to have a CT scan today and had to reschedule for the second time this week because I keep falling ill/not being able to leave bed from pain.

I feel so useless and hopeless. I've been to so many doctors, they've tried so many things for my pain but none of it ever goes away. I got my MMJ card but I have to wait to go to a dispensary and I can't take pain pills because I have aggressive liver disease. It's like my entire body is trying to just give up and I'm right along with it, honestly.

Sorry. I just needed to vent this. The onset of my illnesses/injuries was the beginning of the end for me. Now it's just a matter of how long I can possibly last before it wears me down enough to CTB. I'm currently bundled up in my bed and my partner is trying to take care of me, he brings me drinks and ice packs and heating pads and feeds me when I'm useless like this and it makes me feel so guilty. He works all day just to babysit me afterward. He never complains but I feel like his life would be so much better if he didn't have to worry about me anymore.

I don't know. I'm not thinking quite straight because of the migraine and all of the medications, this has become a ramble. I'm sorry.

 

[WornOutLife]

Vent as much as you want, pal. We're here to "listen" to you no matter what.
As for the migraines, I know a lot about them just because I get them all the time.
One drug that helps me lots is "naproxene" and lots of cold water. Try them out ;)

 

[SmellyRat]

I get really bad migraines too caused by stress.
Alcohol helps, but it doesn't fix it

 

[Weary Soul]

Along with a whole host of physical disabilities, I also get cluster migraines. They come in batches that last for days at a time, and then they go away for maybe a week if I'm lucky, but they always come back. Even my emergency abortive medications don't always work, like today.

I don't know how much longer I can stand the chronic pain. The migraines render me absolutely useless, I can't see out of one of my eyes, half of my face feels paralyzed, my speech gets fucked up, the half of my body that the migraine is on feels sluggish and heavy and is hard to control, it ruins everything. I was supposed to have a CT scan today and had to reschedule for the second time this week because I keep falling ill/not being able to leave bed from pain.

I feel so useless and hopeless. I've been to so many doctors, they've tried so many things for my pain but none of it ever goes away. I got my MMJ card but I have to wait to go to a dispensary and I can't take pain pills because I have aggressive liver disease. It's like my entire body is trying to just give up and I'm right along with it, honestly.

Sorry. I just needed to vent this. The onset of my illnesses/injuries was the beginning of the end for me. Now it's just a matter of how long I can possibly last before it wears me down enough to CTB. I'm currently bundled up in my bed and my partner is trying to take care of me, he brings me drinks and ice packs and heating pads and feeds me when I'm useless like this and it makes me feel so guilty. He works all day just to babysit me afterward. He never complains but I feel like his life would be so much better if he didn't have to worry about me anymore.

I don't know. I'm not thinking quite straight because of the migraine and all of the medications, this has become a ramble. I'm sorry.

I am so sorry you know this pain.

I have had many TBIs, but have also suffered from migraine prior to and after the TBIs.

They knock me on my ass and all I want is oblivion until it is over. It is hard to put into words for those who have not experienced them - and yes, mine were cluster migraines too.

I have worked in Pharma for many years, and typically do not recommend taking a medication that is newly out on the market. But, I was so desperate for relief, I tried this one.

In any case, I went to my neurologist to try and get relief, and he gave me a sample injection in the office. By the time I walked out of there, the migraine was already receding. If I recall correctly, it is a once a month injection (easily injected at home so no need to go to the office), so not too bad for the relief it provides.

A link to the new treatments is provided below. I actually worked on Phase 1 trials for a medication that has the same mechanism of action and the science behind it is solid. My only hesitation with this med is that it is a biologic, and biologic treatments come with some serious risks.

For me, I was willing to take those risks to get relief. It was a life changer at the time. With any med it is always a decision as to whether the benefits outweigh the risks.

I hope you take a break from the computer. Maybe your partner can research this for you. It might help. They are very expensive right now (in the US), but you can get aid if the cost is too much.

https://www.webmd.com/migraines-headaches/news/20180517/fda-approves-first-of-new-migraine-drugs

<3

On edit: If you don't want to click on the link. One of the first to be approved was called Erenumab (Aimovig). There are likely a few others out there now (at least 3 that I know of). A good place to start research, or to ask your doc about.

Peace

 

[vikingman]

hope you get better

 

[succor]

I get really bad migraines too caused by stress.
Alcohol helps, but it doesn't fix it

I miss alcohol. Unfortunately because of my liver disease I haven't been able to drink or eat anything containing any kind of alcohol because my doctor doesn't want to tip my into cirrhosis.

I am so sorry you know this pain.

Thank you for such thorough advice. At this point, I'm willing to try anything. I've heard of Aimovig before but I was scared at first to try new medications but now I feel I have nothing to lose. Right now all I have is zofran, phenergan, and rizatriptan. I'm nervous that my hepatologist won't approve aimovig because of my liver disease though. I was supposed to start Humira because of my psoriatic arthritis and possible IBD but my hepatologist told menot to because it can potentially cause liver damage and I already am teetering on cirrhosis. I'll definitely bring up the injection to him though. Thank you so much, it's comforting to hear from someone who's tried it.

 

[DocNo]

have migraine for 37 years now. started as a kid. back then i also vomited if the pain got too strong. in my early twenties i learned while being stoned from pot, letting the pain a little bit flow away from me or to abstract it somehow.
experimented later with pot but the paranoia aspect was too much for me. cbd helped a little to let the pain flow away but too little to do it any longer.

over the years it got always a bit worse. have nearly 3-4 days a week at least a little headache and 3-4 times a month serious headache. without painkillers which i tried for some time most of the stronger attacks endured for 18-24 hours with at least pain level 7, but mostly 8-9.
three times in my life i was at level 10 which felt really like being close to the end.
so i am mostly on painkillers but sometimes they don't help and i have to sit it out.
sleeping in bed is also impossible cause the quality of sleep is poorer and i wake up with even more pain. so i always sit while having migraine.

food discipline helps me a lot if i spare the classic triggers like chocolate (the cacao), alcohol, cheese. i also noticed that noodles (especially from wheat, but also other grains) increase my headaches. it also seems that some spices increase the chance. i always loved thai-food but my body doesn't seem to like it.
another classic trigger is sleeping long after having too little sleep the night(s) before.

what also helped is apple vingear. so i drink a little thinned with water every day after getting up.

it seems that the reasons for migraines are very different for most of us but maybe some of my measures are helpful for others.

edit: most of the years i had mainly left side headaches - mostly starting on the front and then wandering to the left.
since about 10 years ago i also have sometimes headaches on the right side, which feel more dull - not like the sharp pain on the left.
here i noticed at some point, that eating a bit of raw onion lowers the pain and also frees my nose. feels a bit like there is some blockade which is reduced by the onion. helps sometime even better than painkillers but not always.

 

[Weary Soul]

I miss alcohol. Unfortunately because of my liver disease I haven't been able to drink or eat anything containing any kind of alcohol because my doctor doesn't want to tip my into cirrhosis.




Thank you for such thorough advice. At this point, I'm willing to try anything. I've heard of Aimovig before but I was scared at first to try new medications but now I feel I have nothing to lose. Right now all I have is zofran, phenergan, and rizatriptan. I'm nervous that my hepatologist won't approve aimovig because of my liver disease though. I was supposed to start Humira because of my psoriatic arthritis and possible IBD but my hepatologist told menot to because it can potentially cause liver damage and I already am teetering on cirrhosis. I'll definitely bring up the injection to him though. Thank you so much, it's comforting to hear from someone who's tried it.

Sighs, these new meds are biologics like Humira, infliximab, etc. and with compromised health may be very risky.

My advice would be to make sure to ask the person who treats your migraines to consult with your internist/hepatologist.

Zofran and phenergan are anti-nausea meds and the triptans are good for migraines, but from my experience must be taken very early (Ie, when the first signs of migraine start).

I have also done a simple regimen of diphenhydramine (Benadryl - enough to knock me out) along with Zofran to prevent vomiting. It has worked for me in the past - but I am not a doctor - so always check with your doctor, especially with any sort of liver problems.

The liver is the gateway for most drugs, and taking the wrong ones can make liver disease worse.

<3

 

[Gnip]

True migraines are one bullet I was fortunate enough to dodge, but from what I understand about them, one potential quick treatment might be to place a freezer gel cold pack on the forehead while placing the hands in hot or warm water to shut blood from the head to the extremities. (The hands and feet can be over 35 degrees cooler than the head. Of course you don't need to get the hands and feet wet to warm them up.)

 

[DocNo]

True migraines are one bullet I was fortunate enough to dodge, but from what I understand about them, one potential quick treatment might be to place a freezer gel cold pack on the forehead while placing the hands in hot or warm water to shut blood from the head to the extremities. (The hands and feet can be over 35 degrees cooler than the head. Of course you don't need to get the hands and feet wet to warm them up.)

cooling also helps me. but only just for short times. having for example a cold pack too long on the head made it less effective.

what i noticed when my hands are cold that cooling my head with it also feels for some time better. but never thought about the reason behind it. have to try that sometimes with water.

a bit peppermint oil on the temporal areas also eases it a bit but in a more limited amount.

also putting some pressure on my nose bone and bending my upper spine area back, pushing the head back.

 

[Sinkinshyp]

have you tried relpax for your migraine? I had them daily for 8 months the only relief I got was a demerol mix shot in the emergency room than relpax was a miracle worker

 

[Gnip]

Along with a whole host of physical disabilities, I also get cluster migraines. They come in batches that last for days at a time, and then they go away for maybe a week if I'm lucky, but they always come back. Even my emergency abortive medications don't always work, like today.

I don't know how much longer I can stand the chronic pain. The migraines render me absolutely useless, I can't see out of one of my eyes, half of my face feels paralyzed, my speech gets fucked up, the half of my body that the migraine is on feels sluggish and heavy and is hard to control, it ruins everything. I was supposed to have a CT scan today and had to reschedule for the second time this week because I keep falling ill/not being able to leave bed from pain.

I feel so useless and hopeless. I've been to so many doctors, they've tried so many things for my pain but none of it ever goes away. I got my MMJ card but I have to wait to go to a dispensary and I can't take pain pills because I have aggressive liver disease. It's like my entire body is trying to just give up and I'm right along with it, honestly.

Sorry. I just needed to vent this. The onset of my illnesses/injuries was the beginning of the end for me. Now it's just a matter of how long I can possibly last before it wears me down enough to CTB. I'm currently bundled up in my bed and my partner is trying to take care of me, he brings me drinks and ice packs and heating pads and feeds me when I'm useless like this and it makes me feel so guilty. He works all day just to babysit me afterward. He never complains but I feel like his life would be so much better if he didn't have to worry about me anymore.

I don't know. I'm not thinking quite straight because of the migraine and all of the medications, this has become a ramble. I'm sorry.

Here's one potential self help alternative to medications for addressing migraine headaches (something I've already posted a couple times here at SS):


Authentic migraines have sometimes been treated with Autogenic Training, a form of self talk suggestion which includes sending messages to redirect blood flow from the head to the extremities. For example, the hands can be 65 degrees Fahrenheit, but volitionally elevated to a temperature of 99 degree Fahrenheit in a matter of minutes.

Heating the feet and hands while applying freezer gel packs to the head might produce the same effect, but this is only speculation, as my chronic headaches are caused by bone spurs in my neck rather than migraines.

What follows is a verbatim description of Autogenic Training.

AUTOGENIC TRAINING​

Imagine being able to tell your body to relax-really relax-and have it respond! That's precisely what you may be able to do through autogenic training, a form of self-suggestion you can master in minutes and use every day to to help ease the symptoms of stress.

Autogenic (that is, self-regulating or self-generating) training was developed by Dr. Johannes Heinrich Schultz and Dr. Wolfgang Luthe, both German neurologists, early in this century and published in 1932. The technique is based on their medical research (particularly in hypnosis and yoga, but without ceding some control of mind that hypnosis requires, or getting entangled in the mysticism and idealism of yoga) and has been used primarily to treat a variety of maladies, including migraines. But it seems to work best as a stress tamer.

Basically it consists of getting into a passive, relaxed frame of mind while giving your body a series of self instructions, such as, "My heartbeat is calm and regular." This hypnotic body talking, say researchers, can somehow produce physiological changes, including deep, stress releasing relaxation. And practicing, they say, makes it easier to get the body to "listen" and react.

Dr. Martin Schaffer, clinical psychologist, head of the Stress Management Institute in San Francisco and author of Life after Stress, explains the easy steps to autogenic relaxation.

As with other relaxation techniques, you need to get into a quiet room to begin. Turn the lights down low and wear loose clothing. Sit in a chair that comfortably supports your head, back, legs and arms. Or lie down with a pillow under your head, feet slightly apart, and arms at your sides but not touching your body. Get as comfortable as you can.

Then close your eyes and slowly recite the following instructions, breathing deeply and evenly, saying the verbal cues to yourself as you exhale.


1. "My hands and arms are heavy and warm" (five times).

2. "My legs and feet are heavy and warm" (five times).

3. "My abdomen is warm and comfortable" (five times). [Omit this step if you have ulcers.]

4. "My breathing is deep and even" (ten times).

5. "My heartbeat is slightly calm and regular" (ten times).

6. "My forehead is cool" (five times). [Note: Saying your forehead is "cold" instead of "cool" may result in headaches!]

7. "When I open my eyes, I will remain relaxed and refreshed" (three times).

Now perform the following sequence of body movements:

1. Move your hands and arms about.

2. Move your feet and legs about.

3. Rotate your head.

4. Open your eyes and sit up.

All this should be done with an attitude of passive concentration. Observe what's happening to your body, but don't consciously try to analyze it. By all means don't criticize yourself for having distracting thoughts. If your mind wanders, simply bring it back to to your instructions as soon as possible.

Dr. Shaffer advises doing 2-minute autogenic training sessions ten times a day. "When you spend ten little times a day bringing your tension level down, it's unlikely to get up that high," he says.

And be patient: Experts say that in some cases, autogenic training can take weeks to achieve the desired physiological effect.


Unexpected Results

Be forewarned that autogenic training is serious therapy and can have profound effects. There's a small chance that you may, for example, experience "autogenic discharges"-tingling or other body sensations, involuntary movements, pain, or even a desire to cry. "When that happens, simply do nothing," says Dr. Shaffer. "Tell yourself this is a normal discharge of tension in your body."

In rare cases, some people lie back, begin their autogenic rituals, but instead of feeling relaxed, lapse into a panic of anxiety. "That happens with people who need tension as a defense," says Dr. Shaffer. "They're getting rid of their tension and comes anxiety. Things they've not paid attention to are coming up to the surface." His advice is to just let it pass and continue the autogenic formula; if the agitation continues, stop the training and seek professional therapy to get to the root of your anxiety.

If you have high or low blood pressure, diabetes, hypoglycemic conditions or heart conditions, consult your physician before you even begin autogenics. Those with severe mental or emotional disorders are discouraged from even trying the technique. And if you find yourself feeling continually restless during or after autogenic sessions-or if you suffer any disquieting aftereffects-practice only under the supervision of a professional autogenic training instructor.

Source-POSITIVE LIVING AND HEALTH: The Complete Guide to Brain/Body Healing & Mental Empowerment, Rodale Press-Pages 249-250.

 

[succor]

have migraine for 37 years now. started as a kid. back then i also vomited if the pain got too strong. in my early twenties i learned while being stoned from pot, letting the pain a little bit flow away from me or to abstract it somehow.
experimented later with pot but the paranoia aspect was too much for me. cbd helped a little to let the pain flow away but too little to do it any longer..

Thank you for your suggestions, your personal experiences are comforting in the sense that they give me a feeling of solidarity. I just got some CBD products so hopefully that'll help. I've never tried apple cider vinegar though!

The liver is the gateway for most drugs, and taking the wrong ones can make liver disease worse.

<3

Alas, that's the most frustrating part. All of the medications that I need to potentially treat my other illnesses have the potential to hurt my liver more. I'm not even 30 yet so my hepatologist is really trying to lean into prevention so we can avoid needing a transplant but with so many other health issues... :(

True migraines are one bullet I was fortunate enough to dodge, but from what I understand about them, one potential quick treatment might be to place a freezer gel cold pack on the forehead while placing the hands in hot or warm water to shut blood from the head to the extremities. (The hands and feet can be over 35 degrees cooler than the head. Of course you don't need to get the hands and feet wet to warm them up.)

This is good advice, I actually use a variation of the hot/cold now and it's one of the only things that provides even a little bit of relief. Cold masks are a savior, I always have 2 in the freezer. :)

have you tried relpax for your migraine? I had them daily for 8 months the only relief I got was a demerol mix shot in the emergency room than relpax was a miracle worker

I haven't tried Relpax, no. I've tried Sumatriptan, which I had a poor reaction to, and Rizatriptan, which is what I take now and is one of the only things that'll touch it.

Here's one potential self help alternative to medications for addressing migraine headaches (something I've already posted a couple times here at SS):

I've actually tried a variation of this taught to me by my old therapist. I've found that it has the potential to help when my GI issues are flaring to a degree, but unfortunately it doesn't really touch the migraines.

I'm sorry for the late response everyone, the migraines still haven't gone away and I've essentially been bedridden for ages now. I'm sitting with a neck massager and cold pack and heating pad. Hopefully it breaks soon.

 

[J Tizzle]

Im so sorry youre struggling with this. Im here because of chronic pain as well. I dont deal with migraines as much, but if have psuedotumor cerebri (intracranial hypertension) and have constant headaches. Its awful, and I feel like people don't understand how disabling it is. Hang in there.

 

[W’ren]

(((Hugs)))
Migraines are terrible. Cluster migraines are terrible multiplied...
I've had migraines since i was a child. At first they called them cluster headaches then they realized that they were migraines... I guess that's at least 38 years now... They are chronic and last days sometimes, hours others- no medications have ever seemed to really work- the only thing i've been able to do is discover my food triggers by keeping a food diary and migraine diary and then try and avoid them.
I have other health issues as well that i am on pain medications for yet i still get the migraines..
I have found that the tried + true way to help my migraines when they happen is to treat my stomach with gravol () and my head with naproxen. If the package says 1-2 pills i take 2, - then go to bed with an ice pack on the back if my neck for a while. In the dark, in the quiet if possible-for me sound and light are huge triggers as i get occular migraines too and i get fairly disruptive aura with some of my migraines. Treating the stomach with the head when it comes to migraines is so important...
I was offered botox injections for my migraines but i could not afford them. Maybe that would be an option for you to pursue?
My heart goes out to you. The pain of a migraine is unreal and the fact that yours has gone on for days, you deserve all the warm thoughts and hugs. (((More hugs)))
I'm guessing you probably are online to distract yourself from the pain you are feeling but @Weary Soul mentioned taking a break from the computer and is correct to suggest it- the light and focussing on the small print is hurting and tiring your eyes bit by bit until your migraine will hurt more. I'm sorry to say it, as i personally hate hearing it when i have a migraine and am online- but i thought maybe you could occasionally maybe take a 10 min break and come back? Use a cold pack, shut your eyes, rest them, then come back and chat more?
I hope so much that your migraine eases soon.