Am I crazy? Your thoughts

[Joyce Sandberg]

It is an indication of a need for supplemental oxygen. The root cause must first be determined. A right heart cath and vq scan can rule in or out a pulmonary hypertension condition. I have PH (CTEPH) and it was diagnosed through those 2 tests. I am oxygen 24/7. I cannot even walk 6 feet before dropping to 85. I need to use 6 ltrs to walk around my kitchen and even at that move very slowly. I need 2-3 ltrs just sitting. 4 ltrs sleeping.
My Echo did not show my rare disease. I went to a specialized pulmonary dr. at Cleveland Clinic in S. Florida as both my local pulmo and cardio drs. were not able to provide me with an accurate diagnosis.
My initial challenge was bilateral blood clots on both lungs. 5 months later these clots disolved but my shortness of breath and low saturation levels remained. Many tests later by local drs. still did not reveal what was happening.
Be certain to be proactive.

[Brittany Foster]

Great advice, Joyce.
I am glad that you were proactive in your healthcare and spoke up about your needs and made sure to get the best care and other opinions. Our stories can certainly help others to receive a timely diagnosis and make sure they are going through the right steps to get there. Thank you for your feedback on this post. How are you doing now? I see that you are on 6l of oxygen which must really make things difficult for you. Are you symptoms improved at all since starting any treatments or therapies?

[jen-cueva]

Great job at being proactive, Joyce! This is very important!

Colleen , great tips ! I also do the same when adding or increasing dosages, with all of the side effects, it’s tough to find out which Ned may be causing what symptoms.

I don’t think I know you but welcome and I’ll try and go read more information about you and your son. I always admire the strength and PHight that the parents of our PH kids have!

[Brittany Foster]

Jen,
I agree that sometimes things like medication adjustments can trigger a migraine for me! If it gets really bad, I’m prescribed meds to help with the migraines.

[Brittany Foster]

Hi Libby,
I have experienced exactly what you are saying here. Everything from the feeling “loopy and out of it” to the migraine episodes (which my neurologists attributes to the low oxygen levels) and the seeing spots and oxygen dropping on exertion. If your doctors haven’t done the 6 minute walk test, they should repeat it, or give you one for the first time especially if your levels are dropping with exertion. When I got put on oxygen and when I use my oxygen with activity this greatly improves my symptoms although it doesn’t always show improvement on the pulse ox machine because of my blood flow and anatomy of my vascular system due to my CHD. But this is something that you should mention you your doctors. You are not over reacting and making a build deal out of nothing and you certainly aren’t crazy. But, admittedly I felt “crazy” too for many years before getting put on oxygen. I was told that it was “all in my head” until doctors checked my oxygen when I was walking and then I went home with supplemental oxygen after being admitted into the hospital. I still use supplemental oxygen with activity, if not I get these exact symptoms that you are talking about. I am glad you have an upcoming appt with your doctos.

[Colleen]

Migraines have always been a huge issue for my son, both when he had PH and post transplant. However, more times than not, the migraines where a symptom of another issue so he always self-evaluated whenever he would feel one starting. It might be possible you where experiencing your first migraine, but why? I think it is wise to advocate for yourself regarding the oxygen concerns.

[Brittany Foster]

Colleen,
I feel the same why. There is usually some sort of reason why these things happen and if it is correlated with lower oxygen upon self evaluation than it’s important to get that same evaluation at the doctor’s office so it can all be documented and they can start working on getting to the bottom of things! Did he still get a lot of migraines post transplant? I know with a lot of the post transplant medications this can be a big symptom to manage. How did he manage these migraines?

[Valerie]

Libby, me to the forum brought a migraine and Brittany’s post about migraine in patients with PH. From your description, I’d say it’s a migraine, too. But I have it manifested at about 15 years, probably due to teenage hormonal changes. And I have a hereditary migraine, so there was no question of “where did that come from?”. Did any of your family have similar problems?
I have an aura migraine and it starts with blind spots. Then I don’t see anything on one side at all. An hour later, the aura passes and begins a terrible headache, which sometimes develops into a “plague head”. I mean, I can feel weird for a few days afterwards, like my eyes are bulging or my head is spinning. But this does not always happen. Migraine rarely arises in another way: as if covering some kind of wave, lays ears, in the eyes of almost all dark, it makes me hot. And such attacks sometimes grow into an aura, and sometimes it takes a couple of minutes.
I bought a pulse oximeter recently and measured oxygen during the attack, and after, and the next day. But special differences with other indications I didn’t notice.

[Brittany Foster]

Valerie,
I can relate to your migraines with aura that you’re talking about. There have been times that I had a migraine that ended up limiting my body functions. These are called a complex migraine with aura and they make it seem as if I’m having a stroke
For a short time I may lose some of my vision and I also lose some feeling and experience numbness
If it’s really bad it impacts my speech too. They always take precautions at the ER when this happens because of my heart and lung history and check for stroke. I have had less of these attacks since being on oxygen and they have improved a lot thankfully. How do you manage yours when this happens?

[Valerie]

Brittany, I used to take pills like sumatriptan when I had an attack. Then I realized that there is no difference, I drink the pill or not – the aura still holds about an hour and my head hurts all the same. Then the neurologist recommended me to drink when the attack tablet “picamilon” (I read that it is not approved in the United States). I follow this advice, though it is meaningless. Also, I was prescribed some injections “to prevent migraine”, but they were a little painful, and did not bring any benefit.
As a result, I just try to sit or lie down. If I’m at home, I turn on the TV quietly and slightly dim the light (so that something distracts from sad thoughts, so as not to fall asleep, but that the head does not ache more). If I’m at work, I also try to sit down and breathe deeply, open the window, I can drink mint tea, inhale mint essential oil.

[Brittany Foster]

Valerie,
I had adverse reactions to migraine medications similar to you. My reaction to the medication was that it made me very jittery and anxious and increased my heart rate. It’s good that you are finding you own things that work for you thought even if it just provides a small amount of relief, it’s still better than suffering so much. I wish there was something more to do to help this because I know so many people (not just those with PH) who suffer from this and it can be very debilitating. I can empathize a lot.

[Colleen]

Brittany,
Migraines where a huge issue post transplant but he has been managing them much better over the past few years. He sees a Neurologist and takes a medication called Topiramate which has helped tremendously! When he feels a migraine coming on he has to place himself in a dark room, keep a warm cloth on his forehead and take Tylenol. Waiting it out is really all he can do.

One think he learned early on with PH is, if possible, do one dosage increase or medication change/addition at a time, giving each at least a week. This helps narrow down which medication might be triggering a migraine or other symptoms. He has followed this rule post transplant as well.

When migraines become more frequent he keeps a log of when they come and go. This helps him and his doctors narrow down what might be causing them, as in Libby’s case, possibly low oxygen.

[Brittany Foster]

Colleen,
Those are all really great things that he is doing to stay on top of his health and monitor his symptoms . I’m sure logging it helps the doctors to see if there are any patterns, particularly if he started or stopped a medication during the time.

[jen-cueva]

Libby,
First off, I don’t think you are crazy ! I know at times we start to feel that way especially when doctors tend to dismiss our concerns and symptoms. You have some great advice so far.

I also would suggest an overnight oximetry if you haven’t had one recently so they can send it with you home and when you’re doing your daily activities, including sleeping, it will monitor your oxygen levels. I, too , have had an issue as my oxygen levels often fluctuate. It may be pretty good sitting but once I get up and move much at all, it drops. Even bathing and getting dressed . I hope you’re feeling better and you get some answers after you see your doctor this week .

[Vanessa Vaile]

In addition to 6MW test and overnight oximetry, ask about an exercise tolerance test that determines oxygen needs. The exact name escapes me at the moment but it’s like crossing exercise tolerance. The short version is that tech walks you hooked up to pulse oximeter off oxygen until your levels drop below 90%, then recover and walk again w/ 2l/m oxygen until your levels drop, recover and repeat w/ oxygen at next level, repeat procedure until you walk 6 minutes with your oxygen staying at 90% or above.

And no, it’s not you. You’re not crazy: being proactive is part of how you take care of yourself. Post after post across the forum, different situations, medical histories, ages and so on, this recurring message is a common thread. Trust yourself. If I, like so many others, hadn’t persisted, I’d still be un or mis-diagnosed and quite possibly not even here at all.

[Vanessa Vaile]

oops ~ left out part of the second sentence. I don’t see an edit button, so here’s the rest. This should make more sense: “…like crossing exercise tolerance and a 6 Minute Walk text — a mashup of the two.”

[Brittany Foster]

Vanessa,
at my clinic they did this for me to determine what my liter flow of oxygen would need to be with exertion. This is something that they do when they see that you may have a need for oxygen and they are trying to see what oxygen amount brings your levels up to a better % oxygen. I’m not sure if there is an exact name for it. It sounds similar to the 6 minute walk test though, but during that test they stop you if it goes below a certain amount. This is probably just the oxygen test to see how much someone would need.

Also maybe you are thinking of a cardiopulmonary exercise stress test? (CPET) ?

[Vanessa Vaile]

Yes, @brittany-foster, what you describe is the same or very similar to the one I did at National Jewish — and no, definitely not a stress test. It is an exercise tolerance test with oxygen titration to measure exertional hypoxia and determine oxygen requirements. I’ve noticed from forum discussion and journal articles that the same test is not necessarily done the same way in different hospitals or clinical settings.

I found this particular test very informative as I increased my walking range and think it might well be for @libby as well.

When trying to figure out *which* condition or medication is causing whatever — bear in mind that it can be and imo often is a combination of factors. As for breathing, always consider the weather — temperature, changes in barometric pressure, wind, humidity, air quality, etc.

[Libby]

Wow, thank you for all the responses. Joyce, I most definitely have PH, I just don’t know if the low oxygen is PH related or heart related as I have bad CHD or if its both! I have not had the 6 minute walk, but have had stress test done. I wi ask about it during my visit. I guess I just feel crazy because often even when my oxygen drops I feel almost %100 fine except for maybe a little breathless, it seems like with oxygen so low I would need to sit down or have chest pain or something but its not that severe feeling. Joyce, when your oxygen levels get down to 85, do you FEEL really yuck or is it a little subtler than that?

[jen-cueva]

Libby, I hope you can get answers soon. As far as oxygen levels , at times I may not even feel like mine is low. Often our bodies can compensate fir the low saturation of oxygen especially if it’s bern going on awhile. Other days , I’ll feel more symptoms like chest pain, shortness of breath , headache, lightheaded and dizziness .

Keep fighting for answers , if they know it’s dropping, I would think they would order some home oxygen while they continue testing. I mean PH or CHD , the would be ordering supplemental oxygen. I’m sure it’s frustrating !

[Brittany Foster]

Libby,
I know what you mean by not always feeling “off” sometimes I can walk around and stand up and look fine and feel okay with an oxygen level in the high 80s but other people may be more short of breath. When I start really noticing symptoms, that’s when it starts dropping into the low 80s and for me the drop from high 80s/ low 90s to low 80s is quite extreme and I feel the symptoms of that more. But some days I feel more symptomatic than others and I don’t think I can blame my oxygen solely on that. I also have a breathing disorder and a heart conditions so I am in a similar situation as you.

[jen-cueva]

Brittany , you make some great points! Often when we feel sluggish and more symptomatic, it’s difficult to figure out which illness is causing what or even our meds. It’s like what came first the chicken or the egg…