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    • #22881
      Brittany Foster
      Keymaster

      With this flu I have been getting really severe migraines and headaches. I am prescribed pain medication to take for severe pain when I need relief and can take it a few times a day if needed. I have always struggled finding a treatment for migraines and severe headaches that works. Wondering if there are treatments or tricks that have worked for people that experience this? I know sometimes we can be limited on the medications we can take, especially if you are susceptible to arrythmias like I am.

      Do you experience frequent migraines or severe headaches? What does your treatment plan look like for this? Are there certain medications you can’t take due to your existing conditions?

    • #22882
      Kevin Smith
      Participant

      When I was taking Selexipag and Tadalfil together in the morning, along with the then-prescribed 360 mg Diovan, I would have a dreadful headache (a migraine, I guess) for about 4 hours. My second pulmonologist eventually realized that I was most likely experiencing too much vasodilation (especially blaming the unnecessary BP med – not a dig at my cardiologist!). I separated the Tadalafil from the first Selexipag of the day by about 5 hours. I found the timing of doses was critical for how I ultimately felt. No more headaches. I say all that only because I know you take a lot of meds, and it might be worth asking your pulmonologist about hypovasodilation, too. Yasher koach*, Brittany…

      (*”go from strength to strength”)

    • #22884
      Brittany Foster
      Keymaster

      Hey @ksmith610 Thank you so much for your response. This has been a cause of my migraines in the past and I had to actually stop a couple medications because the vaso dilation would get so severe and the headaches were getting intolerable. I remember when I would go to lay down it would feel like my head was about to explode ! After stopping some of those medications it helped more so I can see why spacing out the dosage would also be beneficial ! I am glad that you were able to get to the bottom of that because I know firsthand how difficult that is to balance a migraine on top of everything else. Thank you for the strength reminder !

    • #22888
      Colleen Steele
      Keymaster

      I’m so sorry, Brittany. Migraines are the worst! As you know, my son has struggles with them during his PH days and post transplant. Do to his heart conditions he was limited to what he could take for it. I’m curious, what pain medication did your doctor prescribe?

      Post-transplant my son takes Topirimate daily. His doctor said some of his patients call it dope-imate because he can cause severe brain fog. Cullen does have some issues with it but not enough to force him to stop taking it. It has helped him so much!

      However, you are talking about migraines caused by the flu. My husband swears by nasal flushes but neither my son or I can bring ourselves to using that. Have you ever tried it?

    • #22892
      Brittany Foster
      Keymaster

      @colleensteele I am just told that when the migraines get really severe to just take a second dose of the Percocet that I have for pain. My neurologist knows that I can’t take any of the medications for migraines or any of the therapies so that has always been her recommended course of treatment for me. Usually I just take the pain med at night with my tube feeding because through the day the stomach acid and fluid builds up in my stomach and causes a lot of swelling and discomfort. I try to limit the use during the day but if it gets severe enough (like with this flu) I will take an extra on around 5/6 at night so it kicks in before I take my second dose. It has been bad enough where it is keeping me up at night and it’s hard not being able to take anything for it! I am very sensitive to migraine meds but Percocet actually sits well with me believe it or not.

    • #22936
      Valerie
      Participant

      This is so familiar to me!
      Unfortunately, a migraine superimposed on PH is a doubly nasty thing. If only because it can not be treated with almost anything, since drugs will affect the heart and lungs…
      When I have a seizure, I take a “Picamilon” (N-nicotinoyl-GABA) pill. As far as I know, it is not approved for sale in the United States. This is all the neurologist could recommend. She also prescribed me injections of b vitamins, but I only did one course of injections (I really don’t like injections!). I have heard that B vitamins (especially vitamin B2 and B6) are very helpful for improving the state of the nervous system. So I try to take it in tablets, since I can’t stand the injections.
      Brittany, I don’t know if my advice about nutrition will help you. I noticed that many foods cause me migraines and excluded them from the diet. Unfortunately, there are more and more of them. For example: chocolate, coffee, cocoa, nuts, cheese (cheese is the worst!), avocado (too bad), sausage, pickled foods and canned food. The list goes on. Each person has their own “dangerous products” (even oranges and bananas! you can’t even believe it). Of course, it may not be right for me to tell you about this sign of migraine, but in the battle for health and peace of mind, knowledge is not superfluous.
      I also use peppermint essential oil (less often – lavender) – I drip on a napkin or in a cup of water (the сup is on the battery) and inhale. It helps to calm down. Sometimes I add lemon or orange oil to this-these smells are so sweet and uplifting. People say it’s better to rub mint oil in I don’t know if my advice about nutrition will help you, but I haven’t tried it. If I’m at home, I prefer to open the window, dim the lights, and drink mint tea.

    • #22938
      Brittany Foster
      Keymaster

      @valeriekv wow I am really glad that you were able to figure out some of your food triggers and are now eating a diet that is better for your physical health and the migraines. Hopefully you have seen some improvements in all that you are trying to do holistically too. Unfortunately it is not about what I eat, since I can’t eat much by mouth orally. I am more dependent on a tube feed that is giving me vegan formula for everything and products that are vegan, gluten free etc. It is called Kate Farms and has been the better brand that I have tried because of it’s lack of other hidden chemicals that could cause headaches and disrupt things even more. Thank you for your continued feedback and information! It is so helpful to know what others are going through too

      • #22940
        Valerie
        Participant

        Brittany, sorry for the typo, I can’t edit the text. I had in mind that peppermint oil “it’s better to rub the mint oil in temples, but I haven’t tried it.”
        The neurologist also told me that strong sounds and smells, bright lights (like a perfume store or a hypermarket with lots of light bulbs) can cause or increase headaches. She won’t even let me watch TV in the dark! Of course, the increase in headaches with the flu is not due to these things at all… Maybe if you will take your medication at a certain time (for example, at the same time or with a meal), it will help? For example, I know that sildenafil can cause migraines, so I try to avoid its bad effects and take about the same dose at the same time (which is difficult to do, since I do not take the whole pill). Of course, it is very difficult to understand what exactly causes pain in the head, when so many drugs with their side effects…

    • #22955
      Sandra Guajardo
      Participant

      Hello Brittany,
      When I was first starting on Veletri and having to increase pump, I had severe headaches and migraines. I would wet a small wash cloth and put it in the freezer for a few minutes. Placing the cold wash cloth on my forehead and temples helped. Amazon sells several kinds of migraine head wraps and caps that can be put in the freezer prior to using. I try not to take any more pills than the ones I’m already taking daily.

    • #22957
      Brittany Foster
      Keymaster

      @sandra-guajardoutrgv-edu totally understandable about the medication! I know that I try my hardest to avoid having to take medication too but when it gets really severe I just have to take something since I can’t take or tolerate migraine medications specifically. It is hard to treat when there are a lot of my conditions that would contradict the use of certain medication. I like the idea of having some type of wrap for the head that you could put in the freezer. It always helped me to put something cold on the back of my neck too. I have heard that putting cold pack on your neck while your feet are submerged in hot water can be helpful too!

    • #22961
      Elizabeth Wooten
      Participant

      I suffer from hemiplegic migraines that mimic stroke. I take trokendi which is in the same family as toprimate or “dopamax” and I get botox injections in my forehead and skull four times a year. on top of PAH Im also have congestive heart failure. all of these things for me are due to scleroderma. amazingly or ironically 🙂 my heart is fine–its just hardening causing the left ventricle to be unable to pump therefore skyrocketing the pressures. Anyway, Ive often wondered if the migraines are related to the PAH in some form? Brittany ask your doctor about morphine in pill form. I HATE taking it. It is the worst hangover in the world but let me tell you–as a last ditch effort, as in if I don’t want to go to the ER, I will take it. It eases your breathing and the headache is immediately, I mean immediately, gone. BUT the next day you feel horrible. So I don’t like using it. Other tricks that Ive learned are phengran its a great one as is benadryl clear liquid. Toradol is also a lesser non invasive rescue drug. I hope that helps!

    • #22971
      Valerie
      Participant

      Colleen,
      Yes, it’s sad, but both the TV in the dark and the music in the headphones can cause a headache (a movie in a movie theater can be called a TV in the dark?). Presumably, there was a very interesting program on TV, since you overcame the loss of vision to see it (don’t be offended, please, this is a joke. When I have a seizure, I don’t watch TV, but listen to it at a low volume to distract myself). I installed “f.lux” on all computers and watch TV only if at least the table lamp is turned on.

      Brittany,
      I can’t imagine how difficult this is for you. A person with PH dreams that his condition is better than ” normal”, but in the end, he just wants his condition not to be at least worse than “normal”… We must at least reach a balance. It is so difficult for you to maintain a balance because of all these operations, and it is difficult to understand which medication will help and which medication will complicate the case. At least you were able to find the right food. This is a solution to at least one problem. I hope that you will be cured of the flu as soon as possible and the neurologist will choose a gentle medicine for you. As sad as it sounds, treatment for the flu is now the first important thing.
      I remembered another thing. I think that migraines and tension headaches often occur because of an uncomfortable posture, a tension in the neck (when, for example, you have a sedentary job like mine). There are exercises for the neck (the neurologist gave me a brochure with pictures of how to perform the exercises). I also have a massager with wooden rings. This is with two handles that you can hold yourself with your hands and roll on your back or neck. This helps to relax the back and neck muscles at least a little.

    • #22979
      Brittany Foster
      Keymaster

      @thesouthsbest thank you for the information! Morphine has been given to me in IV form so many times in the hospital that I have actually built up a resistance to it. I don’t think I have ever taken the pill form of it so if I ever need to switch pain medication I will be sure to ask about it. The pain medication that I am currently taking now doesn’t really last as long in my body and I get about an hour or so of relief from it until it starts to feel unbearable again. Usually I just hope to fall asleep within that hour that it’s working to give my body some sort of break. I really appreciate your feedback though and I will keep that in mind!

    • #22980
      Brittany Foster
      Keymaster

      @valeriekv you bring up a good point when it comes to headaches and tension headaches or migraines. A lot of it really can be related to the neck and upper back. I used to go for massage therapy once every few weeks and my back of my neck and all those muscles were always so tight. When I would go in with a really bad migraine she did a few techniques to help lessen it and it really would work! So I believe that there is a lot of truth to the migraines being caused by certain strains put on the body. I had to stop going to the massage therapy after the surgery that I had because my body is just not healed appropriately yet. But I am hoping to go back soon!

    • #22989
      Colleen Steele
      Keymaster

      LOL @valeriekv I don’t get offended that easily. Actually, I really did laugh at your comment because I was really disappointed that I had to delay watching the last episode of The Marvelous Mrs. Maisel. After a long and stressful week I was looking forward to sitting down and watching it on a Friday night. I think it was about 10 minutes into it I started seeing floaters which is always my first warning that a serious migraine is on it’s way. I downed ibuprofen real quick and had my fingers crossed that it wouldn’t worsen, but it did.

      I had to google f.lux because I had never heard of it. Do you find that has helped?

    • #22997
      Brittany Foster
      Keymaster

      @colleensteele That is always one of my warning signs too is the floaters that I see across my eyes that sometimes look really bright and sometimes they look more dull and like an aura. They change depending on the type of migraine that I am getting. I find that the ones that make it harder to look at light always are the worst kind and I need a stronger medication to help it.

    • #23003
      Valerie
      Participant

      Colleen,
      Oh, how I hate it when a migraine gets in the way of doing what I love! This is really annoying most of all. When it happens at work, I quietly hope it goes away. But when a trouble like yours happens, it’s very off-balance (If it wasn’t for the Internet, we would have lost the chance to see or find out what we missed forever).
      I found out about the “f.lux” program here, on the forum! It really helps a lot, all shades become warm (but not distorted), the eyes do not get harmful blue light, and it’s not annoying. I even installed this program on my work computer, although it’s often used by others (I think they did not even notice the change). If you, like me, prefer warm lamps rather than cold blue ones, you should definitely try this app (in smartphones, you don’t even need to download anything, everything is in the settings).
      Brittany,
      these “floaters”, colored spots, floating crescents – this is what I experience, too. Sometimes glare on cars or mirrors frighten me terribly (I immediately think that this is the beginning of the aura and occurs in my head, and then it turns out that it is just a glare).
      I hope you will soon recover enough to be able to get a massage. I think that we are all very stressed psychologically because of the constant experiences that PH brings, so massage should help reduce the frequency and strength of headaches.
      I noticed that migraines are not uncommon in people with heart problems. I read a lot of comments in the Russian community of people with migraines, and some of them write, for example, that they had heart surgery and after it there were frequent migraines (or similar comments). I don’t know if this is a coincidence, or if there has been research on it. The heart, lungs, and brain are entangled with blood vessels, so there’s probably a connection. Maybe I’m getting a little off topic, but… What do you think?

    • #23006
      Sarah Kuykendall
      Participant

      I know this wouldn’t work for everyone, but when they changed my blood pressure medication to a beta blocker my migraines went away. There are some unpleasant side effects from the beta blocker (I take Metoprolol), but getting rid of the migraines makes them worth it. Also, over time the side effects seem to have lessened.

    • #23008
      Colleen Steele
      Keymaster

      Sarah, this has been my personal experience too. I have mitral valve prolapse which I was diagnosed with in high school but at the same time I was also struggling with migraines. I was placed on a beta blocked and told I would be killing two birds with one stone by taking it. The problem was that it kept lowing my blood pressure too much making me constantly light headed and tired. As an adult my doctor allowed me to make the decision to go off of the beta blocker because my mitral valve prolapse is not severe. My migraines worsened when I did but I decided feeling light headed and extremely tired all the time was more of an issue.

      My son takes metoprolol as well because he developed high blood pressure from kidney disease after his transplant. He has problems with migraines too but between the beta blocker and topirimate, his headaches are fewer now.

      I’m so glad you have found something that is working well for you!

    • #23010
      Colleen Steele
      Keymaster

      @valeriekv that’s why it never heard to bring old topics to the discussions again, in case some members missed the previous posts. I’m going to tell my son about f.lux. I have the feeling he is going to wish he knew about it a long time ago.

      I use to work full time as an administrative assistant and you are right, getting migraines at work is horrible! There were a few times when I couldn’t push through it because of losing my vision. I would have no choice but to tell my co-workers that I have to close my office door, turn off the lights and put my head on my desk. I mean, what can you do if you can’t see?

    • #23012
      Colleen Steele
      Keymaster

      @brittany-foster that’s true for me too that how my vision is affected depends on what kind of migraine I am getting. I had my first migraine when I was 12 but the first time I experienced vision problems with one was as a Freshman in college. I was at a seminar and at first I thought something was wrong with the screen the professor was using because words appeared to be cut off. Then it kept getting worse until I could barely see. My friends had to help guide me to the nurses station. I thought I was having a stroke or something. When you experience that symptom for the first time with no knowledge of what’s causing it, it can be scary. Do you remember the first time you experience vision loss caused by a migraine? Did it freak you out as much as it did me?

    • #23017
      Brittany Foster
      Keymaster

      @valeriekv you bring up a really good point! I have a lot of friends in the congenital heart defect world that have trouble with migraines and headaches. I really do think that there is a connection there and I think a large part of it would have to do with circulation and blood flow and my neurologist feels the same way which makes the type of migraines that I get even more difficult to treat. I also know what you mean with the glare from the lights of cars. This bothers me a lot especially when driving at night. It really clouds my vision. I try to have others drive at night because of this ! It seems unsafe and makes my eyes water.

    • #23019
      Brittany Foster
      Keymaster

      @sarahk interesting that you say that about the beta blocker medications. Some people also use beta blocker meds for anxiety when other medications don’t work. I could see how it would also have an anti anxiety effect since it slows down the nervous system by slowing the heart rate and reducing the blood pressure which when those 2 are high they could definitely contribute to worsening stress and anxiety. I have been taking metoprolol for quite some time after I got my pacemaker placed and it has really worked a lot for me! Thank you for bringing this up.

    • #23020
      Brittany Foster
      Keymaster

      @colleensteele That is definitely one of the side effects of the beta blocker for sure. When I was on a higher dose than I am now and was experiencing a lot of dizziness and light headedness, my doctors put me on a medication called florinef that actually helped with blood volume and helped to keep the blood vessels moving well and holding enough fluid in. Kind of similar to someone having to take a salt pill to help stay hydrated or help with dizziness and orthostatic intolerance.

    • #23022
      Brittany Foster
      Keymaster

      @colleensteele I remember it so vividly ! I was actually about 10 years old and was visiting my great grandma in a nursing home. I remember starting to feel dizzy and went to get a fountain soda and my aunt came running over the me and said I was “white as a ghost” I remember I couldn’t read any of the soda names and everything from there was a blur. They ended up checking my blood pressures and they were very low. I had to just sit there and have some sweets and gatorade to help.

    • #23031
      Colleen Steele
      Keymaster

      @brittany-foster you were so young and it must have been scary…scary for your aunt too.

    • #23032
      Colleen Steele
      Keymaster

      @brittany-foster I never heard of florinef before so thanks for sharing. I made a mental note in case I feel the need to ask a doctor about it sometime.

    • #23037
      Brittany Foster
      Keymaster

      @colleensteele it definitely was scary. I feel like when things happen now I start to think more along the lines of “is this heart related” but when I was younger I never thought of the worst case scenario, it was always something like “maybe I’m just dehydrated, or maybe I just need sugar or something to eat” . Never , “maybe my brain isn’t getting enough bloodflow and that’s why I am passing out” . But now that I KNOW these things, I tend to think about them more. Definitely a source of anxiety when you start to actually KNOW what is truly going on and aren’t naive to it anymore.

    • #23038
      Brittany Foster
      Keymaster

      @colleensteele I know a lot of people with autonomic dysfunction who are on it for things like dizziness with standing, light headed, low blood pressure, fluctuations in BP, etc

    • #23041
      Colleen Steele
      Keymaster

      @brittany-foster very true! When I look back on what my son dealt with on a daily basis I think issues with his heart was the most scary for him. Difficulty breathing is of course awful, but there was a more intense look of panic he would get in his eyes when he experience chest pains and other heart related issues.

      PH and anxiety really do like to hold hands, don’t they?

    • #23049
      Denise K Thompson
      Participant

      After a lifetime of chronic migraines, now that I don’t have estrogen to blame for them, I get my relief from butalbital, with or without codiene. I live in the dark. F lux is a good hint. My tv has a soft screen light mode that helps. Butalbital is generic for fioricet. A mild barbituate, caffiene & tylenol. Of course phenergan & sometimes flexeril helps, but resp depression is always a concern. I think hypoxia is my current cause, often waking with migraine or tention that turns to migraine.

    • #23057
      Brittany Foster
      Keymaster

      Denise,

      Do you find that you are waking up with the migraines or headaches and that they gradually get better through the day or is it just something that keeps getting worse and worse through the day? When I had trouble with sleep apnea the migraines were a lot worse in the beginning of the day but wearing the bipap seemed to help with that. Also, boosting my oxygen up really does help with the migraines and headaches. I think oxygen is helpful for headaches even with the average person that doesn’t have hypoxia. Some people go to oxygen bars and they seem to restore their energy and some of their physical symptoms get better. I definitely see the effects from it and the revitalizing effect.

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