Living With Pulmonary Hypertension and Dementia

[brittany-foster]

My risk of getting this is actually pretty high. I had a functional study done to see where my brain function was at with a team of nuerologists and neuro psyhologists. They found that my risk is high because I did not do well with things like reaction time, short term memory, and recall. The reaction time was a bit scary because I had just got into a car accident because of my poor reaction time to what was happening a few months prior to having the testing done. It was extensive testing and lasted a little over 4 hours and was a very detailed report. It actually wasn’t surprising to them given my low oxygen levels and they said the testing matched up with others who have things like sleep apnea related low oxygen levels. It was interesting but it is something that I need to look out for and keep an eye on if I feel like it is getting worse.

[Colleen]

Brittany,
It’s so sad how much a disease like PH can affect health in more ways than one. I hope the car accident wasn’t real bad. You must have been so scared! I’m going to tuck this study away in my notes in case I ever feel like my son should be tested. He no longer has low oxygen levels but I worry about all the many medications he is on causing early dementia. His migraine medication alone often makes his thinking clouded.

Thank you for sharing your personal experience with yet another tough topic.

[brittany-foster]

There are certainly medications that can do that to you, Colleen! I am on a few medications currently and have been on some in the past that have made my thinking really clouded to the point where I felt like a walking zombie and was unable to concentrate on anything without going into a “fog”. Definitely something to keep an eye on. Others actually noticed this with me vs me noticing it in myself first. Things like “repeating the same thing over and over again” even though I forgot that I said it before, even if it was only a few minutes prior. Some people (like my boyfriend) take it as an insult thinking I assume he doesn’t listen, it can be hard with memory trouble and relationships !

[Colleen]

Yes, my son can relate to what you have experienced with the “fog”. The worst for him is his migraine medication. It’s called Topiramate and it has worked wonders on his migraines so he would hate to have to give it up. But he has told his doctor that he often has trouble concentrating. I even noticed that often I will be talking to him and he’ll stop me and say, “I’m sorry, can you back up a few sentences and repeat what you said because my mind stopped focusing.” If it starts to affect him in college he might have to consider trying a different medication. His doctor told him he has patients he refer to Topiramate as Dope-ramate for that reason.

[brittany-foster]

I actually have a friend who was on this medication recently and had the same reaction. I know that it’s hard to give up a medication that you know is helping for one thing but at the same time impacting another area of your life. Sometimes my beta blocker medication does that for me. I know that beta blockers are also used for some types of PH treatment and used to manage the symptoms of heart failure so I wonder if others have this experience with taking them? I will post that as a topic for discussion to see if others can relate. Keep me posted on how your son does in college with it. How does he think he is doing so far with concentrating? It was always pretty hard for me to concentrate in my lectures but I know they have disability services at colleges and I really wish I looked into this more for help, especially with my classes that were later in the day or when I had a day of a full workload of classes !

[Colleen]

Brittany,
So far it’s still more worth taking the medication to prevent migraines which would have a greater effect on his classes than the brain fog he sometimes experiences. It’s been manageable for the most part but as he takes on more classes per semester and more challenging ones, we’ll see how it goes.

[brittany-foster]

Colleen,
I can definitely see where it would be worth taking the medications even if they cause some side effects. I am hopeful that he will be able to continue the medication and this his grades will still be okay. What are his courses like that he’s taking now ? Does he know what he wants to study and major in?

[Colleen]

He always said he was going into computer programming but a month before he started college he informed his dad and I that he wants to go into medical social work. He feels it’s the best way he can give back and use his personal experience. He has had two social workers over the past 10+ years who made a real difference in his life and he felt inspired by them to go in this direction.

This semester he only took one class, Communications. He knew he would miss a week of school this semester because of the Stanford trip and not knowing what to expect from college, he decided to take it slow to start. He is really loving college and most of all, to finally be physically attending school after years of on-line education.

[carol-volckmann]

Colleen your topic is close to my heart
I am high on scale for Alzheimer’s as both my father and my aunt(his sister) died from this horrific disease. I have a learning disorder (dyslexia) and some of my medications can cause dementia. I was turned down for long term healtb care because I did not do well when they tested me – that was 20 years ago. My short term memory is not good – but then I tell myself it is because I am 75.

[brittany-foster]

Carol, I’m so sorry to hear about your close relatives that ended up passing from Alzheimers. I lost my grandfather last year due to Alzheimer’s and it was sad to see the distance that happened in his mind towards the end of his life. That was one of the worst parts for me to witness is that they just felt like such a different person, like it wasn’t even them. I’m sure you can relate to those feelings of sadness.

[Colleen]

Carol, I am so sorry to hear how much Alzheimer’s has touched your family. It is sad to watch a loved one struggle with it. I’ve also witnessed a few family members walk this path. It sounds like despite your risks you have been clear minded. You are 75 and amazing! I enjoy hearing from you.

[carol-volckmann]

Brittney, you are so right – I believe to witness someone care about loose themselves into a dark world they don’t understand is harder. I think it is also harder on our care givers than it is for us – they have no control and can feel helpless. We don’t have much control but I think more than they do.

Hope all is going a bit better for you now that you are home and that you are feeling better! Thinking of you.

[brittany-foster]

Thank you, Carol. Definitely is a slow recovery when I get out of the hospital but it is going better than it was so just trying to take things each day as they come. I was doing okay with the tube feeding and getting in more calories than what my body is used to but today my machine completely shut down on me ! Technology is great, but when things go wrong it’s like “well… what now?” so now just waiting on a call from my home nurse who will probably be in touch with the company to deliver another machine so I can get my nutrients in for the day.

[carol-volckmann]

Oh Brittney, I am so sorry you ate going through this. Yes technology is great for our health issues and it is amazing what they can do today. But when it comes to our serious health issue, it can be really scary snd dangerous when ot does not work.

Seems every day I get notices from the FDA recalling some device does not work properly and can cause serious problems

I have been waiting for Medtronics implantable pump to deliver my Remodulin which would reduce pain and fear of infections, but now they found out the pump and others made can br hacked into!

Brittney I hope your nurse is able to get you a new machine TODAY. I feel so bad for you to have to endure this all while trying to build up your sttenght.

I pray you receive your machine right away. Fingers crossed!!!!

[brittany-foster]

Thank you so much, Carol. Luckily my mom has the personal number of the representative from the company that I get my supplies from. She reached out to him and they helped me to troubleshoot the feeding pump that I have. Luckily I am getting in the calories that my body needs today. It is hard but each day is getting a little easier to do what I’m supposed to. I remind myself that slow progress is still progress, even when I have taken some steps back

[carol-volckmann]

So good to hear Brittney! You are absolutely right – progress IS progress, so keep on going! Hope you have a great weekend! You are in my thoughts.

[carol-volckmann]

Colleen you are terrific and thank you for your very kind words. You always have something positive to say no matter what is hitting you and your family. You really are one amazing woman yourself. I hope your son can stay on his medication for the migraines.

When I went back to school(in my late 40s) because of my learning disabilities I signed up for extra help. It really did help, I waz able to take any of my tests in a separate area and allowed more time. This was all coordinated by the learning center. The pressure was off and it made it easier to cconcentrate.

Wishing him the best.

[Colleen]

Thank you Carol! My son’s college offers free tutoring and his counselor has told him if he ever needs special arrangements to take a test to let them know. It’s possible he could test in a quiet location if he needs to. I keep reminding him to keep those options in mind if he starts to need them. So far he is managing but there is a long academic road ahead of him.

[brittany-foster]

Carol,
I had a really good experience with the support at my school and the help for learning disavilities. The extended time helped a lot, especially with my degree of brain fog that I experienced some days. I used to think about wanting to go back to school but then I honestly would drive myself crazy trying to concentrate on school and manage my health conditions. I always wished I went for social work so I could work in hospitals.

[carol-volckmann]

Brittney you may not have an official degree in social work, but in my minds eye you are so much more than s social worker! You have helped soooo many! Thank you!

[brittany-foster]

Carol, WOW! Thank YOU so much for saying that. I try to help others and give back as much kindness and support as I can because I now how it feels and I don’t want others to experience the level of isolation I sometimes felt without meeting people similar to me. I’m so thankful for all of you. We are in this together.

[carol-volckmann]

Colleen, how wonderful. What an amazing young man and what sn inspiration he is for others. He’s a hero in my book and wish him all the very best!!

[Colleen]

Thank you so much @cdvol3gmail-com for your kind words about my son. It makes me teary eyed when people acknowledge all that he has been through and how far he has come.

[Valerie]

Our lives are dangerous and difficult! (it’s a nervous joke, lol)
I haven’t heard this information before, but I’ve been thinking about it for a long time. My theory was that the brain thinks with difficulty due to lack of oxygen. Regular lack of oxygen leads to insufficient nutrition of brain cells and they gradually stop working normally (I try to follow the logic).
I have already learned that heredity plays a very important role. I read an article where a doctor said something like “modern children have so many different diseases because they “collect a whole bunch” of the diseases of their fathers and mothers). I think a predisposition to PH is not as often inherited as a predisposition to nervous and mental illness is transmitted (especially in today’s fast frenzied world).
Besides… I don’t take anything but sildenafil, but I have concerns about it. For example, I know that migraine is a narrowing and then a sharp expansion of the vessels of the brain. I sometimes think that maybe sildenafil should be taken little by little at small intervals. I think about how the effect of this ends, the vessels gradually narrow, then I take a new pill, and the vessels expand dramatically (maybe I’m wrong). But in addition, it is only necessary to read the instructions to sildenafil – and you can recognize half of the side effects (which, perhaps, have nothing to do with it). For example: “Side effects from the nervous system: very often – headache; often-tremor, paresthesia, unspecified burning sensation, hypesthesia; frequency unknown-migraine. Mental disorders: often-insomnia, anxiety.” So I don’t know if sildenafil can increase the risk of dementia or other nervous and mental illnesses.
Maybe it seems to me (a person concerned about a topic will notice it everywhere), but I think a lot of people with PH have migraines. Please correct me if I’m wrong. But I got on the forum thanks to Brittany’s article about migraines, then heard about other people with PH and migraines. Colleen, you’re writing about your son and his migraines. The thing is, my migraine, which I thought was a side effect of PH, doesn’t seem to come from just that. After several examinations a neurologist recently revealed that I have a disease of the nervous system, and I began to pay attention to the important moments. My risk of migraine increases dramatically after eating even a meager amount of ” bad ” food (especially with glutamate, vinegar, tyramine (avocado for me like a bullet in the head)). I’m like an obsessive paranoid person now: under a microscope, I study everything that is offered to me, and eat only the most simple and familiar. I’m not sure now if PH or nervous system disease is involved. Does anyone else have the same effect?

[Colleen]

Valerie @valeriekv,
Hereditary does play a large part and what some people don’t know is that you can inherit migraines. Both my husband and I have suffered with migraines since our teens so it was inevitable that my son would also struggle with the same pains. However, to make matters worse, many of the medications he is taking are also triggers. As you mentioned, lack of oxygen when he had PH…also a trigger. So his migraines tend to be off the charts.

A week after transplant he developed a rare side effect from an immunosupresent called PRES which caused seizures and debilitating migraines. When taken off of the medication it took 2 months to rid his brain of the PRES.

He also took sildenafil when he had PH and with that as just about all his PH meds, we had to do increases and decreases very, very slowly. He has always been super sensitive to medications, especially vasodilators. They helped with his PH but the side effects, mainly migraines, were often quite bad.

My son also sees a neurologist regularly but has never been diagnosed with a nervous system disease. What type of tests did your doctor perform to diagnose you with the nervous system condition?

Foods definitely effect my son’s migraines, and even my own. Too much caffeine or…too little, not drinking enough water and not consuming enough healthy foods can cause us migraines.

[Valerie]

Colleen, I am amazed at the courage and resilience of your family! You’re all incredibly brave people. What a pity you and your husband both have migraines. It was probably impossible for your son not to get it.
It is an evil irony when a person cures one disease and aggravates the second. When I read the medication instructions, I get spooked by the list of side effects, and end up increasingly choosing not to take it. I do not cancel sildenafil only.
I did “magnetic resonance imaging of the brain” on my own initiative (the therapist told me: because of migraines? what is it? come on, it’s nothing). Did your son undergo such an examination? I read that 60 % of people on the planet will not have a good MRI of the brain. But an experienced good neurologist should understand what is nonsense, and what really needs to be given a lot of attention.
You confirm what I said about lack of oxygen as a trigger for migraines. At least it’s not my paranoia, lol.

[Colleen]

Valerie,

Not in your head, it has been my son’s experience that lack of oxygen is a migraine trigger. I think Brittany has expressed the same thing. Now more than ever because of his kidney disease, dehydration is also a big migraine trigger. Now when he feels a headache come on before he reaches for the Tylenol he grabs a bottle of water.

He has had many MRI’s of his brain. Since he has been relieved of the PRES his neurologist said his brain has been looking healthy.

I’m sorry that you struggle migraine pain too. They are such a miserable thing to experience.

[Valerie]

Colleen, you’re absolutely right. And I quite since forgotten, that already been mulling about shortage of water (my fantasy on subject “little water – blood thickens and slows, the vessels constrict, and if after a long break you drink water, then the migraine will begin again…”. Now you know I like to theorize, lol). Because of this, I trained myself to carry a bottle of water and drink during the day.
I’m glad your son’s brain is healthy! It’s one of the best news you can hear when everything is so violent.

[brittany-foster]

Hi Valerie,
I can relate to the nervous system conditions on top of PH and heart conditions. It is hard to tell one from the other sometimes especially when a lot of the symptoms seem to overlap. Especially the ones that you are talking about with the migraines, headaches, and the brain fog. This can also come from the nervous system condition. What nervous system condition do you have if you don’t mind me asking? I have autonomic nervous system conditions from my spinal condition that impacts my central nervous system as well as from vagus nerve damage that controls literally almost all the bodily functions. It is a hard thing to manage and has a great impact on the quality of life.

[Valerie]

Brittany, as I wrote above, I did a magnetic resonance imaging of the brain. I did it two years ago and I did it this year to compare the results. One neurologist saw me after the first exam, and I sent her the results of the second. She told me I had nerve demyelination foci in my brain, but that wasn’t her specialty. She referred me to another neurologist and I was stumped because that other neurologist is one of the most unfriendly people (as you can see, I don’t trust most of the doctors I meet. Although I went to this neurologist with the aspiration that I would trust her). As a result, I try to understand from my own experience what is good and what is bad for me. But some points puzzle me: for example, if there is weakness in the legs or there is shaking of the hands-is it a side effect of sildenafil or nerve damage in the brain? I think this question will baffle even an experienced doctor. I do not think that doctors often meet such patients.
I’m sorry you have a nerve problem too, and especially a vagus nerve. It must be very hard to bear when there are so many other problems. How do “problems” with nerves manifest themselves? Are you doing something to mitigate these effects?

[brittany-foster]

Valerie,
It is so hard when dealing with multiple conditions and I can see how some doctors may reach blocks in their care for patients and what they can help with vs what is really out of their hands. It is important to at least find doctors that are willing to help me manage my symptoms even though the underlying conditions can’t technically be “cured”. For me, a lot of the neurological symptoms and conditions that I have are just managed with medications for each symptom. For example, my chronic constipation due to nerve damage of the intestines and colon is managed and has been managed my whole life with laxatives and following up with GI and my neurosurgeon. Other things like urinary retention and bladder conditions I sometimes have to self catheterize when I have flare ups. I have to be pretty aware of how I’m feeling at all times, which can get overwhelming sometimes.

[brittany-foster]

Valerie,
It is so hard when dealing with multiple conditions and I can see how some doctors may reach blocks in their care for patients and what they can help with vs what is really out of their hands. It is important to at least find doctors that are willing to help me manage my symptoms even though the underlying conditions can’t technically be “cured”. For me, a lot of the neurological symptoms and conditions that I have are just managed with medications for each symptom. For example, my chronic constipation due to nerve damage of the intestines and colon is managed and has been managed my whole life with laxatives and following up with GI and my neurosurgeon. Other things like urinary retention and bladder conditions I sometimes have to self catheterize when I have flare ups. I have to be pretty aware of how I’m feeling at all times, which can get overwhelming sometimes.

[carol-volckmann]

Hi Valerie, I don’t know if this will help you or not. When I was first diagnosed with PH the doctor put me on sildenfil. A new team took me of that because, as you pointed out, it works for short periods and they 1st wanted to put me on more of a time release med (Adcirca) and treat my PAH with 2 other meds Remodulin and Lateris. The side effects on all this stuff is pretty scary but working with my team it all seems to keep me pretty stable. And yes, I do need to watch what I eat and drink.
Sounds like you are doing a really good job being your own advocate and doing as much research as you can. Wishing you all the best!!!

[brittany-foster]

Carol,
You are so right. It definitely is an adjustment period for sure but then when we get a treatment plan and work well with out team it really makes a difference in the quality of life that we have.

[Valerie]

Carol, thank you for your kind words! It’s wonderful that you’re lucky with your team of doctors.
Sorry, maybe I do not understand correctly, I use a translator. But if I understand your words correctly, do you support my theory that sildenafil works for a short time? That is, it is true that problems with the vessels of the brain can be and as a side effect of its action “expansion – contraction – sharp expansion after a new portion”? Of course, I’m not saying that this is always the cause, but it can happen, too.

[brittany-foster]

Valerie,
when I was on medication that worked on the blood vessels and expanded the blood vessels, that alone gave me a lot of migraines and worsening headaches. I would talk with your doctors and see if that could be causing some of your worsening symptoms and what you should do about it. Sometimes it means taking other medications to combat the side effects of another.

[Valerie]

Brittany, I think your advice is very good, only, my cardiologist is probably not very strong in the blood vessels of the brain unfortunately, and the other doctors do not cause me confidence. Do you manage with medications for each symptom? It’s great that you were able to find a drug for each symptom! It’s very rare for me. I’d rather not take the cure at all than find the next one. You’re very good at dealing with such diverse and complex symptoms.

[carol-volckmann]

Valerie, yes sildenfil works for a short period. That is why my pulmonologist put me on Adcirca which works in a time release action. And I agree with your thoughts that opening the vessels then constricting them cannot be helpful. You might want to go over this with your doctors. Hope it goes well and I hope you will find relief.

[brittany-foster]

Carol,
I have found that time release medications in general work bettter with my body. My body seems to metabolize medications pretty quickly so they are out of my system in a short amount of time. This is why medications that worked on my blood vessels weren’t that great for me especially because things like my blood pressure would go from being one extreme to the other (too low to borderline high) it was just too much for my body to handle. I’m glad your doctors put you on a better regimen.