Warning: some graphic descriptions of health problems upcoming.
Jump straight to the list of treatments
As I write this, I have a migraine. Or what I have been calling a migraine. I have had a chronic migraine for almost 5 years. Some days, it is what you would think of as a typical migraine – extreme neck, temple, and ocular pain, dizziness, vomiting, exacerbated by light and sound. Some days, it is only neck, spine, arms, and hands pain. Some days, it’s feeling as though I never woke up. Some days, it’s predominately emotional, until I pay attention to the fact that I have pervasive pain throughout my body. Some days, it’s only gastronomical symptoms, such as regurgitation several times an hour. And often, it results in being unable to eliminate despite using gobs of laxatives, until the majority of the pain passes.
It actually started as primarily digestive problems in 2012. I stopped being able to eliminate, and just bending at the waist hurt. My brother had had appendix cancer, so I went to the ER, where I was diagnosed with “middlesmertz” (literally, unexplainable abdominal pain) and declared “healthy.” My diet and training regiment did nothing to help. In 3 months, I went from dancing and exercising several hours a day to being unable to stand on the subway for 20 minutes without collapsing. Vomiting started becoming a regular occurrence.
In hindsight, warning signs were there – The fact that I had to stretch an hour a day to move when I was only in my 20s. I contracted some early connective tissue problems like blepharitis and dry eye syndrome. As a teen, I was diagnosed with depression and anxiety (which I now realized ignored the physical pain I had throughout my body, that I didn’t realize wasn’t supposed to be there). I was once wheeled out of school in a wheelchair after I passed out due to menstrual pain.
My first gastroenterologist said he wasn’t sure what it could be and to find a new doctor. My first rheumatologist said that while I had a positive ANA, I did not have enough symptoms to categorize it as an autoimmune disease. My second gastroenterologist said I definitely had fibromyalgia, as the pain and fatigue were too severe to be regular irritable bowel syndrome.
In 2013, the headaches began, and stress began to take its toll. The constant brain fog and frequent vomiting spells made working and commuting extremely difficult. We decided to leave New York, my home for a decade, and return to the area I grew up where we still had friends and my husband’s family, in search of a slower pace and cheaper cost of living. We bought and renovated a house, took several trips to Disney theme parks, and I wrote financial computer programs in my free hours, while I gradually adjusted to being partially functional only about half of a month.
I found new doctors, and continued to explore treatments and diagnoses as I acquired new diagnoses. I started seeing a therapist for dealing with the acute emotional symptoms as well as complaining about the illness and horrible medical system. We discovered that my mother is likely the carrier, as she is also ANA positive, although her only symptom is arthritis – and she was adopted, so we don’t know more about her medical history. I also started learning that because I don’t have anything curable, diagnoses mattered much less than treating symptoms. And treatments for one symptom ended up exacerbating others, so it turned into a game of Whack-a-mole with my body.
I decided to start writing out what I have tried here as a reference for others. It may not actually be useful to anyone – our bodies are all different – but at least know that you aren’t alone, and aren’t insane, in trying a number of things and none of them seem to have any effect. I will update it with my progress as I try new things.
THE LIST OF TREATMENTS
I am currently testing these for the past 90 days. My regurgitation is gone, even without taking my PPI. The chronic daily migraine has improved significantly, although everything that triggered my migraine to get worse still gives me a migraine. Since I am trying them at all the same time, I’m not sure which are actually useful.
- Autoimmune Protocol – I attempted a reintroduction, black pepper, and that has correlated with a 3 day migraine. I’m hoping that future reintroduction attempts go smoother.
- Eating at regular intervals 4 and half hours apart – I’m combining this with the new diet, and it seems to be going well.
- SIBO treatment (Rifaximin) – I combined this with the Autoimmune Protocol. I attribute the success I have had with the diet more than the drug treatments, but since I did both at the same time, I’m not sure
- Supplements – I didn’t experience any success taking the supplements individually. However, I am now combining some with the new diet, so it is possible that some of these helping:
- Digestive enzymes
- Vitamin D – Although I take supplements to keep it at an acceptable range, I don’t notice a physical difference when it is normal versus low. I now combine it with Vitamin K, and I am trialing Vitamin D3 instead of D2.
- CoQ10 – I now take this as Ubiquinol with PQQ
- Vitamin B12
- Magnesium – I have been taking this as a spray, since magnesium glycinate caused digestive distress in the past. I also combine it with calcium.
- Fish Oil – I hate the taste of seafood, so this is how I have gotten my omega 3s the last few years.
- Collagen – I never regularly ate collagen or connective tissue before, and my nails have stopped peeling off, so it seems like a step in the right direction.
- Sumatriptan – Works most migraine days, although I can only take it 10 days of the month and 3 times a week. It took awhile to figure out the correct dosage for me (50 mg 2 hours apart), as higher doses exacerbates some of the symptoms.
- Naratriptan – Less effective at killing the migraine, but it lasts longer if I expect to have a migraine for several days (mainly menstrual migraines).
- Migraine cocktails (Combination of injectable sumatriptan, antihistamine, antinausea, steroid, magnesium) – After I have had a migraine for a week, this usually kills it.
- Botox – This doesn’t reduce the migraine frequency, or any symptom besides head pain, but it helps with the vice death grip I used to get with migraines (and still occasionally do when it wears off before my next treatment).
- Zofran (dissolvable) – Much better than the pills because they work faster and I am able to keep them down.
- Linzess – I believe this is essentially what makes my intestinal pain manageable. It took the maximum dose to initially become helpful however.
- Miralax – I take this up to 3 times a day, and combined with the Linzess, I can no eliminate most days.
- Melatonin – I had bad insomnia until I started taking 3mg a day. I discovered that more makes me more fatigued the next day. It helps me go to sleep, but not stay asleep.
- Zero Gravity Chair – Switching from sitting upright at a desk to reclining in a zero gravity chair with a laptop stand has made computing bearable again. If my intestinal cramps or nausea are too acute, I can’t sit on it as it force a right angle, however.
- Neck collar – Wearing a neck collar while my cervical muscles spasm has helped reduce some of the migraine pain and length, particularly while combining with ice packs.
- Ice – See above. I use an ice pack for physical therapists, which stays cold for more than half an hour. I have a cervical one for my neck/shoulders as well as a larger one for my spine.
- Trigger point massage – This helps my body calm down after an inflammation attack (otherwise, it seems that my lost mobility tends to reignite another attack). Unfortunately, it can exacerbate the attack if it’s still happening when I get it done.
- Autoimmune Protocol – See Unknown
- Ginger tea – Sometimes this helps if it’s very minor, but usually not by the time I notice I’m nauseas.
- Zofran (pills) – By the time I realize I need them, I’m usually too close to vomiting to be able to keep them down.
- Elavil – I was originally prescribed this for IBS, then for migraines, and I have gone on and off of it several times after not getting help. I actually use the minimum dose now for allodynia – if I don’t use it, I will wake up scratching all over, feeling like everything touching my skin makes it crawl. Increased doses didn’t seem to have an effect, other than to make me drowsy.
- Bentyl – This only helps stop my stomach from convulsing if the Zofran doesn’t stop repeated vomiting, although it makes me feel like crap for a few days after I take it (although, it’s better than having to go to the ER for dehydration).
- Activated carbon – This only helps in the rare instances that my stomach feels like it will explode.
- Recumbent biking – My preferred exercise because I can use just the lower half of my body, which is in relatively good condition. Unfortunately, it will exacerbate a migraine.
- Walking – This has helped loosen my joints when they get too stiff, although it will exacerbate a migraine.
- Swimming – Same as walking, although less assessable since I don’t have a pool.
- Whirlpool bath – This helps my muscles feel better if I don’t actively have a migraine, but the heat exacerbates it when I do.
- Meditation – This helps me deal mentally with the pain and emotions, more than actually addressing any of the pain itself.
- Reduced garlic/onion – Likely a FODMAP thing, but if my digestive system is already not doing well, eating a lot of garlic and onion makes it worse. However, avoiding them entirely didn’t have much of an effect.
- No processed meat – This didn’t solve my dietary problems, but eating almost any processed meat (sausage, corned beef) would definitely wreak havoc on my intestines.
NO EFFECT OR MADE WORSE
- Chamomile – I still drink it at night as a calming agent, but it doesn’t seem to actually do anything.
- Peppermint – I tried taking this as both pills and a tea to stop intestinal spasms, but I didn’t notice an effect.
- Ibuprofen – If the pain was only in my body, it would help, but it wouldn’t help with a full blown migraine. It also exacerbated my digestive problems.
- Tylonel – No effect.
- Caffeine – If I don’t have any, I sometimes will get a withdrawal headache. But in general, I only drink a cup of green tea, and beyond that doesn’t have an effect on the migraine but will upset my stomach.
- Rizatriptan – No effect.
- Cannabis – Neither CBD oil nor vaping any strains (CBD, sativa, indica dominant) had a noticeable effect on the migraine, muscle pain, or nausea.
- Opioids – It took 2 or 3 visits to ER to discover that any opioid caused me to start cyclical vomiting..
- Lidocaine Injections – the injections caused pain, but it didn’t block any pain.
- Topamax – This made me super foggy and constantly forget things (and words), but didn’t decrease the migraine.
- Gabapentin – I increased this dose slowly until I was almost at the maximum, but all it did was make me light headed and more nauseas.
- Lyrica – Same as gabapentin.
- Propranolol – I only took a low dose of this, and the higher dose made me too dizzy to continue.
- Plaquenil – We tried this with the off chance that the lupus antibodies were the cause of the migraines, but it had no effect.
- Hormones – I tried several different birth control pills (what an unfortunate name, considering they are used for so many other things) but none of them helped the menstrual migraine.
- MigRelief – This didn’t have an effect on the migraine, but the magnesium citrate made the IBS worse.
- Essential oils – Not surprisingly, no effect
- Amitiza – Since Linzess was brand new at the time, my insurance required trialing this first, but it had no effect.
- Probiotics – I have tried several over the years, and none seem to have had any effect
- Stool bulking agents (Citrucel, Metamucil, FiberCon) – None of these helped my elimination, but it did case more pain due to filling my colon, which I then couldn’t evacuate.
- Glutamine – I tried this amino acid to help heal my digestive lining. It turns out that it can actually induce migraines. Whoops.
- Omeprazole – I was regularly regurgitating several times an hour for a few weeks, and this made the pain bearable. But it likely exacerbated problems, like all PPIs, over the long term.
- Physical Therapy – Because my cervical muscles and trapezius were constantly in spasm from the migraine, we tried regular physical therapy to see if strengthening them would help. I ended up in treatment for almost a year, and it increased my range of motion but did nothing to stop the inflammation and pain.
- Regular Massage – This just exacerbated the affected spasms of muscles.
- Integrative Manual Therapy – This temporarily increased my range of motion, but only for a few hours.
- Chiropractor – I haven’t exhausted my options here, but from what I have tried so far, it didn’t realease the muscles in spasm. Due to the rigidity of my cervical muscles, I also have to avoid any sharp movements with them due to higher risk of stroke.
- Acupuncture – No effect for migraines, intestinal pain, or stomach problems. Also really expensive.
- Heat pads – I have discovered that heat exacerbates my migraines.
- Baths – Same as above.
- Stretching – Unfortunately now stretching a muscle that is in a spasm makes it worse.
- Any exercise that affects my trapezius – This makes almost all the symptoms worse. This includes my previous exercise regiments of ballroom dancing, P90X, kickboxing, barre, trampoline, and yoga, as well as common activities like house painting, using a sewing machine, carrying heavy objects, and reaching for top shelves.
- Increased fiber – This didn’t help my elimination, but it did case more pain due to filling my colon, which I then couldn’t evacuate.
- Tyramine-free – These include foods that are commonly thought to cause migraines (e.g. cheese, chocolate), but I had no noticeable difference.
- Gluten-free – I have removed and added gluten into my diet 4 times, and I have not experienced any noticeable difference. I am currently gluten-free again since I am on the Autoimmune Protocol diet, however.
- Dairy-free – I actually tested positive to a casein allergy (but not lactose, oddly enough), so I eliminated dairy for a year. Unfortunately, this didn’t solve anything. I am currently dairy-free again since I am on the Autoimmune Protocol diet, however.
- Nightshade-free – I didn’t notice an improvement when I tried this previously on its own. I am currently nightshade-free again since I am on the Autoimmune Protocol diet, however.
- FODMAP-free – Beyond reducing garlic and onion, I did not notice a change in any of my symptoms. It has helped my father reduce his IBS symptoms, however…
- Reduced Omega 6s – I eliminated vegetable oils and most poultry. This did nothing on its own, though I am experimenting with it again since I am on the Autoimmune Protocol diet.
- Fermented foods – I have experimented with making my own (specifically, yogurt) and haven’t noticed a difference when I take it versus when I don’t.
- Fasting – I tried fasting when migraines got bad. It only made them worse.
- Sugar-free – I tried avoiding all sugars completely when the migraines got bad. It had no noticeable effect.