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Dale H

POTS and Tension Headache - Migraine Treatment

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Hi All, I am new to this board. I was given a working Dx of POTS in March, though I've been through the common path I've seen here in taking a number of years to get diagnosed.

I now believe my triggering event was a TBI (head/neck injury/concussion 5 years ago). Never fully recovered from that and kept progressively getting worse with what I know now are common POTS symptoms. The wheels really fell of in December with multiple near syncope events, several ER visits and hospitalization.

My recent really vexing problem has been a return of tension headaches that turn into migraines. I found that taking my previous medication (Fioricet) for these episodes made my POTS much worse. Nights have been awful and I take a cooler of ice packs to my bed with me. Lucky to get 4 hours of broken sleep a night. My PCP has given me Rx of Imitrex (didn't help) and Nabumetone, which helped a little with the tension portion of the headache at the base of my skull but didn't help with the pulsing/pounding in my head. (I've not had good luck with NSAIDS and POTS so far) So it seems with POTS, the common effective headache medications/pain relievers which relax blood vessels and lower blood pressure are all likely out.

I was wondering if users here have experience with this and what might be working for you. High to maximum dosing with acetaminophen has been tried and wasn't really effective. Helped a little with the headache in the main part of my head but didn't help at all with the triggering tension headache portion at the base of my skull.

Will be looking into botox as that was effective for a while after my TBI.

Also worth mentioning, I was having such bad headaches last year I had PRP Lysate injections in my cervical facet joints (advanced arthritis and nerve root compression) along with an interlaminar (T1-C7) injection. This helped immensely for 8 weeks. Now that I've been Dx'd with POTS the doc said we don't want to be doing facet PRP Lysate injections again as many of the autonomic nerves pass through that area and additional treatment may make things worse. In fact the initial treatment may have precipitated a hastened decline into worse POTS.

Thanks!

-Dale

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I am being treated for low blood pressure, but I don’t have the symptoms of fainting.  I have a number of issues - migraine, hypermobility, fatigue, obstructive sleep apnea, fibromyalgia and have had viral meningitis three times and shingles once (in my 30’s).  I believe these are pretty much all related issues.  I did faint several times in my mid to late teens, but haven’t since then (I’m in my mid 50s).

I can really relate to migraines and tension headaches.  I believe that my migraines and tension headaches which arise out of my neck are related to my autonomic dysfunction.  I have tried an inordinate amount of things to help with my neck with limited success.  As soon as I started taking Florinef, my super sensitive neck improved markedly, but I started waking up with tension headaches — apparently in some people Florinef can cause supine hypertension in the morning.  My specialist added propranolol and that pretty much fixed the morning tension headaches.  

I have also been taking Endep for nearly 10 years.  I have tried getting off it five times through very gradual reduction of doses, but each time my migraines have come back.  The combo of florinef in the morning and propranolol and Endep at night have helped my energy, sleep and headaches/migraines.  I should note that I take relatively low doses of these drugs - 10mg of propranolol and anywhere between 1.25 and 7.5mg of Endep. 

My go to for migraines prior to Florinef working for me was chewable aspirin, then Maxalt and then Valium.  Since using that combination, I have avoided emergency room treatment for migraines.   On the rare occasion that things flare up, I still use that.

My specialist has now advised that I stop florinef due to potential long term side effects, so I am trying to transition to dexamphetamine instead.  So far I haven’t totally descended into neck spasms, although my headaches are definitely closer to the surface as I reduce dosage.  This is my second try of getting off florinef.  

I hope that you can find some relief. 

Lynn

 

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Thank you for the input, I'll discuss with my PCP.

I'm on .2mg florinef daily which gives me supine hypertension, especially at night. Also getting 6gr sodium and 3l water daily. I was thinking the florinef was what was causing my headaches to return.

I've tried reducing my florinef by a 1/4 dose twice now but my POTS got really bad by the 3rd day into the reduction and I went back up to .2mg. I had been successful for a while narrowing my orthostatic pulse spread down to 8-12 bpm by the evening each day but now over the past few weeks it has widened back out to 20-24 bpm. Don't know how much of my headaches may be due to orthostatic stress.

-Dale

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I had really bad headaches that felt like they were on the sides of my head for years

I have almost completely gotten rid of them through massaging the sides of my head

It may not help you, but could be worth a try

First try to massage and see if you can find any sore spots. If you do, I have found that massaging those spots multiple times a day for a few days in a row helps (It takes a few days for it to work for me)

see this topic for more details,

 

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Do you know if you have hyper mobile joints? hEDS? When the joints are lax it forces the muscles to do the job of the tendons/ligaments and in me anyway it results in huge knots in my neck/shoulder muscles and pain. I suffer terribly with tension headaches that lead to migraines. I have been doing 3.5 years of physical therapy and part of that is strengthening my traps and other neck muscles to lessen the knots/stress. I do stretches daily too. The therapist gives me (or did pre Covid-19) massages and heat therapy which I do at home with a hand held massager and heating pads. She also does an occipital release, you will need to look that up. I just purchased a device to do this but haven’t used it yet. I also use a cold pack on my neck/shoulders after exercising my upper body which definitely gives me headaches. I have tried prescription muscle relaxers but most have side effects that are intolerable to me. I have found that pillows designed for neck pain help. There are a few different types of hats that you put ice packs into that really help when I get a migraine. One is called IceKap. That one has a cold pack that goes down your neck and around your head. I hope these ideas help.

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I know how difficult untreated severe headaches can be. I’m so sorry you are going through this. I was in and out of emergency with severe headaches with painful aura of my extremities, etc (triggered from being upright) for months, until I was under care of a neurologist. She ruled out a CFS leak with a battery of tests. She tried many of the regular meds for migraines, with little success. As a very last resort she is now using Botox on me every three months.

I’m no longer having to go to emergency. It has greatly reduced my migraines from forming as frequently and severely (but not my head pressure, etc when upright), The auras have only been slightly diminished. She calls it POTS related, orthostatic idiopathic migraine. My orthostatic specialist says it’s not typical of the POTS headaches he normally sees.

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My PCP had me try a headache cocktail of 20mg prednisone, 10mg prochlorperazine, .5mg lorazepam and 25mg benadryl. This helped my bedtime headache enough that I didn't need to ice my head with ice packs. After that trial he started me on a 7 day prednisone taper (5 days in) and still taking 10mg prochlorperazine. I'm also on .2mg florinef daily. I've noticed my POTS symptoms are improved while on the prednisone but know it isn't a long term option.

Because of Covid-19 haven't been able to get a tilt table test to confirm POTS or type but believe mine is due to damage from a head (TBI) and neck injury 5 years ago. Never fully recovered from that and had bad headaches that would start at the base of my skull and then spread into a migraine like headache. Used to treat with fioricet but found after I developed POTS fioricet helped the headache but made my POTS much worse.

Just got a round of Botox injections (migraine injection pattern). Keeping fingers crossed that will help.

I'm a little anxious to see how my POTS is when I get off the prednisone. At doc office sitting BP was 148/84. Pre-POTS I used to be 116/72. I'm hoping to taper down or off the florinef at some point (required for tilt table). Have been experimenting with my exercise program to find what I can tolerate and what works. I now exercise every other day. Recumbent bike on one day and the next exercise day lower body isometrics. I think before I was exercising too much (bike and isometrics every day) and making myself worse.

Any advice on tapering florinef would be much appreciated. I have a feeling if my BP is lower my bedtime headaches won't be so bad. I've taken my BP while lying in bed with a headache and found it to be 166/90. Kind of a conundrum as the higher BP helps with my POTS symptoms.

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I don't know if you've thought about this option, but have you seen a chiropractor? I was having those horrible base of the skull headaches. I was nauseated and dizzy with them and light hurt my eyes. I regularly see a chiropractor for my back.  (He's aware of my POTS and Chiari.) I told him about my horrible headaches and he was able to mostly make them go away. I only have about one bad headache per month now instead of almost daily. Anyway, that's something to think about. Good Luck!

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I forgot to add that my neurologist also injects some extras beyond the migraine injection pattern. She injects my neck and jaw area, since I have very severe, uncontrolled pain in those spots. I’ve been warned about potential muscle weakening, etc. I’m only taking the Botox because we are so low on options for me. 

Dale H, I hope the Botox helps. My fingers are crossed. It took several rounds before it was helpful for me. Best consult with your doctors about tapering off meds, each person is so different and each specialist has their own tapering protocols.

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I had my Botox injections 4 days ago and have had about an %60 - %80 decrease in tension headaches, which is GREAT! I would probably be feeling even better but with the increased relief I've been doing things that really cause and make my headaches worse such as more computer and smartphone time. Bedtimes are much better.

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I’m so happy to hear! It must be such a relief that your bedtime is better! 

The computer is a big trigger for me too, especially for my neck. I had to give it up and use a tablet instead. I’ve explained to my neurologist that I get “neck headaches” and she seems to understand the concept. Looking up or down too long will trigger one.

I also get coat hanger neck/shoulder discomfort triggered by being upright.

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