Inconvenience of Having to Come Off Meds Abruptly

By Kelly J.

2 min read

Because of a recent medical series of events that led to a major POTS (postural orthostatic tachycardia syndrome) flare-up, I’ve had to stop taking one of my migraine medications, due to the fact that it also lowers blood pressure. Because of all of the recent episodes of syncope, my doctor and I have had several appointments each month, while I continue to monitor my numbers several times a day.

My attacks with and without medication

There have been a lot of eye-opening things in the past two months since this flare-up, including me realizing how much my medication DOES help me every single day. I went without it for nearly two months and it was two of the longest months ever. It definitely felt like a lot more time went by than just those two months. I had tingling on the left side of my body along with nearly every symptom that comes along with my active hemiplegic migraines. Normally with medications, the migraine head pain itself is quite minimal, with a few exceptions each month, mostly related to lack of sleep. But these last two months have literally been a pain in the head and neck, along with all of my left side extremities.

My migraine medications work

This setback allowed me to realize a lot more than just how well my migraine medication has been working, but also a harsh reminder and reality of how bad they get without the medication. Even with IV fluids several times a week to help increase the volume of fluid in my body to help with blood pressure and keeping hydrated, it’s a stark reminder of how ill I feel without it. It’s definitely been a reminder of how thankful I should be that I have a migraine medication that works so well for me.

I'm fortunate and grateful

I feel lucky that I’m able to say this, as I’m sure there will be a few readers that are upset by this since they haven’t been able to find a medication that works consistently for them or they haven’t found anything that helps them with the frequency and amount of pain. I know that I’ve been fortunate to find something that lessens the intensity of my symptoms and has helped me be more independent; but it’s also been a huge shock to me that without the medication, I still struggle just as much, if not more when I’m not able to take it. It’s definitely a reminder that it’s something I will continue to struggle with long-term, with and without medications.

I may still have to skip doses

Currently, right now, I just got the go-ahead to begin taking it again, but it’s going to take a while to build back up in my system and prevent the ones that I’ve frequently been getting. Because I’m still struggling with my POTS and my blood pressure bottoming out, there are days I have to skip my dose and it’s a pretty crappy feeling, especially knowing the pain I’ve been in lately and also knowing how much it works. I’m hoping that this flare of POTS won’t last much longer, but it’s been a long 2 months and I know that there will still likely be days ahead that I’m not able to take it.

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ceci77 Member
I was diagnosed with POTS syndrome in January. So many other conditions overlap and POTS is often misdiagnosed as many other conditions and some people never get a diagnosis or it takes years for them to get diagnosed. I have a severe/extreme case of POTS, or as my cardiologist said, “the worst case she has ever diagnosed” and said I would be extremely difficult to treat if at all. Apparently it is her belief I have always had it but it was most likely mild and because I played sports and soccer until I was 26, my blood volume was always up so I only had the headaches starting at 15 and my blood pressure was always great but it never ever was above 110/70. I started fainting and getting all these weird symptoms a few years ago but I thought they were from panic attacks and that’s also when I was diagnosed with chronic migraine disease. I never knew I had chronic migraine disease because I thought migraines meant you had to have auras and nausea and vomiting and I just had headaches since I was 15 years old and can’t remember a day since that I didn’t have a headache. I just took ibuprofen and Tylenol every day for over 20 years. Then I had a terrible adverse reaction to an antibiotic in December and in January I was diagnosed with POTS syndrome along with so many other things. The cardiologist said it’s possible that POTS could be the actual condition all along like a what came first, the pots or migraines, were my panic attacks actually that or maybe it was actually pots. It’s bad enough to have migraines but adding in pots syndrome is the absolute worst thing ever to happen to me. I am so sorry you have pots and migraines, I truly understand. I know it’s not the exact same for everyone and each pots patient experiences different symptoms and no two pots patients will have all the same symptoms, I hope yours is manageable for you. Mine is apparently the most severe case my cardiologist has ever diagnosed and says I will be extremely difficult to treat and there is a possibility I could not respond to treatment at all. It is so difficult to do things that I used to do with zero effort before and now I have to take several breaks to finish, something as simple as folding a small load of laundry. I am about 60% stronger than I was in December and I am happy for that, but My migraines have been back with a vengeance and it makes it so much harder to try to regain my strength and try to focus on managing my Pots syndrome in the hopes that I can live a life with minimal flare ups from the pots when my migraines just won’t relent. I pray you have a better outcome with your pots and migraines, I truly hope you find a manageable and successful treatment for your pots syndrome.

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