Undiagnosed Symptoms Community
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Avatar universal

looking for answers for my husband

My Husband Ryan has been suffering from seasonal cluster headaches for 4 years now. He was just diagnosed in February of 2015 after years of suffering that time of year, but not really knowing what was going on. When his seasonal cluster headaches came on this year he also had new symptoms as well. My husband gets VERY dizzy at supper time, he says that he can kind of feel it coming on, and it’s like a switch flips and it goes into full power. So dizzy that he can hardly walk, can’t open his eyes and has started to throw up from the feeling it is getting so bad. He describes it to me like having a very bad case of the drunk spins. The first time his episodes came on, he was out to dinner at a fast food restaurant with our oldest son. Suddenly Ryan got very dizzy and lost his sight and his balance and almost drunkenly made his way to the car. Ryan could barley talk during this first episode, and had tingling and numbness in his legs and hands. Somehow (thank GOD) Ryan and our son made it home that night. The rest of the week Ryan felt fine until the next Friday, where about almost the exact time 1 week later Ryan experienced the same issues, when out to dinner with me. We wondered if it was the fast food that was not agreeing with him, so we cut that out. That did not work. Even when we are having a balanced supper at home Ryan was/is still experiencing the symptoms in varying degree of intensity. In more recent days Ryan will eat supper and have the dizziness so bad that he gets very nauseas. He used to not vomit from the feeling but now cannot control it, and has lost 5 lbs in 4 weeks. Ryan has been only eating cereal for supper for about a month now, as that seems to be the only thing he can eat that doesn’t make him sick. Ryan has been to his primary doctor about this issue twice, to his neurologist, to a cardiologist and to an ENT. He has had an EKG, blood withdrawn, a CT scan, an MRI and they all come back looking good. He also has 3 more tests coming up. The neurologist says that Ryan has Postprandial Hypotension and we agree it does seem like he has most of the symptoms of that, but from what we have read it is something found in older men in their 70s, not a 34 year old man. So we question if this is what Ryan has, why it is causing him to have this? As there are other bigger issues that PPHT can be a sign of. When we have asked this question to the doctors we were answered with “that’s a good question”. When told that it sounds like Ryan has PPHT, he was told to eat 5 small meals a day and to hydrate. He has been doing that and still the symptoms have not eased. We were also told to look and see which way his eyes moved when he was having an episode and I looked at him once and he opened his eyes and they were “bouncing” side to side, in a motion almost like he was searching for something. We are becoming increasingly more concerned about this issue, as Ryan has a lightheaded feeling most of the day now, he feels like his episode is about to start like he feels before his “switch flips” but it doesn’t go full on. This has interrupted out lives greatly we have two boys who are very worried about their dad, missing work, and just the fact that Ryan doesn’t feel good.  Our sons are very active, especially this time of year, and it makes it hard to not go out to eat after a late night baseball game, we have stopped eating out because we have spent a half dozen times in the parking lot of a restaurant waiting for him to stop vomiting and start feeling better.  For the most part this happens in the evening at supper time about 6 pm. But within the last two weeks it has popped up at other times too, once in the waiting room at the doctor’s office waiting for a CAT scan, and once at lunch time. It doesn’t seem to matter if Ryan has had 3 bites of food or a whole big meal, or what he eats. I brought home a pizza one night and Ryan was sick after eating it, we ended up with leftovers and Ryan really wanted pizza the next night, he has the same pizza and was fine that night.
We are very worried and honestly confused about what Ryan is going through and are frustrated because we have no answers or a solution. I’m reaching out to you all in hopes you can help us get the answers we so desperately need.
Thank you,
Concerned wife.
2 Responses
134578 tn?1602101550
I assume you have ruled out calcium flecks in the inner ear (like benign positional vertigo) and also migraines?  (The loss of sight is suggestive of migraine.)  Did the MRI use dye?
Ryan was just at the ENT on Monday and the dr. Didnt think he could help him but did schedule a long 2-21/2 hour test on his inner ears, but thats not until the beginning of July. Maybe that will be the test to rule out the calcium flecks?? And yes the MRI used dye.
Avatar universal
There are a couple vascular vein compression syndromes that would cause these problems. Doctors know very little about them so they often go undiagnosed. The most common one that I have is called May- Thurner Syndome as well as Nutcracker Syndrome. 2 other rare ones that sound more like what he could have are Celiac Ganglion Compressiom or Mesenteric Artery Compression Syndrome. These conditions are a very good place to look for undiagnosed problems as they can literally cause problems anywhere in the body and doctors don't know to look for them. They can be seen on ultrasounds if specifically looking for these conditions and Vascular Surgeons or Interventional Radiologist are good doctors that deal with and treat these problems. Private message me if you want more info.
Thank you for the info, I will look into those for sure! He had an ultrasound yesterday, we are still waiting to hear back from the dr. about what they found, If anything.
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