15 year old male with too many problems to count.
Posted , 5 users are following.
I'd like to start and say that I have Asperger's. I've been diagnosed with it since i was around the age of 7 or 8. I have zero food allergies. Zyrtec gives a panic attack even though there is nothing to cause that. I am required to see a therapist every week to every month. (It changes)
This is a long list of many problems. An answer to even just one is greatly appreciated.
First off, heart. My heart is always beating fast no matter what. If I run for 10 seconds, my heart rate jumps to 210 BPM. If i sit down for 1 minute, my resting heart rate is 130 BPM, 5 minutes is 110, and 10 minutes gets a little more normal at about 80-90.
To continue, I have to stay up extremely late in order to fall asleep. If I go to bed too early, I will go insane sitting in my bed doing nothing for the whole night and wont get a bit of sleep. Me going insane from doing nothing for several hours turns into anger and i end up doing something stupid just so I run out of energy to attempt falling asleep again with an increased chance this time. When I wake up, I always feel weak in my legs, and I have to slowly get out of bed to get my legs used to walking again. I'm also always either freezing cold or burning up when I wake up. At some point after I wake up, typically when I enter my other room that I spend most of my time in, my eyes start to feel a little weird and they start fizzling to mostly black with a green tint here and there for about 10 seconds then fizzle away back to my normal vision.
I also get extremely nauseated right before i fall asleep some nights.
Next up, I am also EXTREMELY skinny and weightless. You can see my rib cage through mu shirt if I pull on my shirt to put it flat on my chest. If you can even call it flat, as my rib cage dips about 2 inches in the middle around my heart area. I barely touch 100 pounds here and there, and weighed about 60 until I was 13 almost 14. I just recently turned 15.
I sometimes feel lightheaded for no reason, lasting mostly 5 minutes but sometimes up to 20.
I also get random heart and chest pains out of the blue for about 2 minutes
If I try to take a long breath in, something in my chest stops me like an invisible wall or something after almost a second, maybe 2.
I'm always hungry. If I eat a massive meal at 12:00, before 1, maybe at most 1:30, I'll be starving again.
There are many other smaller issues that i cant think of right now. I'll just stick with these for now. Thanks in advance for any help.
0 likes, 9 replies
emilyhawk55 ItsCat03
Posted
Hi there. This sounds like it could be a form of Ehler's-Danlos syndrome, which is a group of genetic conditions that affect the structure of the connective tissue in various body parts. I have this disorder, hypermobile type. People with EDS can also have POTs (postural tachycardia syndrome) as well as DSPD (delayed sleep phase disorder) which sound similar to what you have described. I have both of those disorders as a result of EDS and I also have Asperger's. Many of us have autism or Asperger's; there appears to be some kind of link there. You should see a rheumatologist and have an echocardiagram to make sure there is no heart valve dilation (vasular-type Ehler's Danlos).
ItsCat03 emilyhawk55
Posted
thanks a ton! It feels a lot better when you get a general grasp of the situation, no matter how correct or incorrect. I appreciate it.
emilyhawk55 ItsCat03
Posted
Wanted to mention a few basic evaluations and tests you can try if you do suspect that you have Ehler's-Danlos. I would add links but the mods won't approve. Just Google each one and you will find them easily.
RHEUMATIC:
Beighton test. This will test for hyper-extensibility which is common in Ehler's-Danlos. If you went to a rheumatologist and they suspected EDS, this test would be included in their clinical evaluation. Take a look at guidelines for the diagnoses of different types of Ehler's-Danlos. Try to narrow it down to which types seem most in alignment with your symptoms.
CARDIAC:
Echocardiagram and EKG would likely come first when you visit a cardiologist. But if those come out normal, you can try this:
Turntable test. If you can't have a turntable test, you can at least test for postural taccychardia to prove that the phenomenon is happening, by measuring your heart rate while changing from position to position. POTs is common with Ehler's-Danlos because the irregular structure of the connective tissue in our blood vessels can cause the blood vessels to expand too quickly. Thus, our heart rate must increase to keep our blood pressure stable. Also consider how hot showers or hot weather affect your cardiac state. If heat makes it worse, that would be another indication. If you think you do have postural taccychardia, you can ingest extra sodium/electrolytes, stay extra hydrated, wear compression socks, take cool showers, and try to keep yourself from overheating.
If you do have POTs, it wouldn't be unheard of for the heart rate to go above 200 during exercise. Mine is about 100-120 at resting.
SLEEP:
If delayed sleep phase syndrome sounds like something you might have, you should see a sleep specialist. Many don't know what DSPS is, but they will at least to a traditional sleep study to rule out more common culprits. If they don't find anything abnormal in the study, you can suggest to them:
Melatonin test. This is a test where you stay in a completely dark room and spit in a tube hourly. The saliva can be tested and you can find out what your natural sleep onset time is.
Actigraphy test. You will wear an actigraphy bracelet that measures your activity for about 2 weeks. This will allow you to get an idea of what your average sleep and wake onset time is, and if you do indeed have DSPS.
I wanted to give you as much info as possible because Ehler's-Danlos can be extremely difficult to diagnose. It's better to have as much knowledge on it as possible. IF you do all the tests, and all the tests constantly come back normal (like me), then this is definitely something to have in mind ❤️
Beverley_01 ItsCat03
Posted
Hi there,
My daughter is on the Autistic Spectrum/Aspergers. I am writing because she too has had trouble sleeping early now for the last few years, she is 16.
If I just look at sleeping, how are you at reading before sleep? Do you have a favourite author that you like to read? do you have a routine at bedtime? For many people having a routine helps such as taking a bath, using lavender in the bathroom, a glass of milk/cup of tea, having a relaxation CD. it can take time for a new routine to get established so don't give up if it doesn't start right away. Do you have dark curtains? My daughter struggles to sleep when it is too bright. Do you drink caffeine? coffee, coke etc stimulates the system and I have read that it shouldn't be drunk after 6pm to help with sleep.
Are you getting enough exercise would you say? Increasing exercise can help make you more tired and thus sleep better.
The fussiness with your eyes I think is pretty common, I get this too and I have had it since I was small and I am 49 now. Also, the weakness in the legs. To help with this, sit on the bed for a few minutes before getting up.
Did you take Zyrtec to help you sleep or for allergy such as hay fever? There are herbal remedies to help sleep that may work for you.
Do you have any pets? we have guinea pigs and a rabbit and these have helped my daughter when she is stressed. Mainly her own guinea pig . When she is stressed, she can't sleep. We just had exams here and so stress was very high. We had a couple of bad nights sleep which isn't too bad.
She can get very hyper and this can keep her awake sometimes but her routine tends to help.
Don't go to bed with things on your mind. Talk to mum/dad/sibling/other family member or a friend. Just getting it out in the open can help.
Ask your therapist for advice on sleeping and relaxation.
Also, a trip to the doctors may help. you may have a vitamin deficiency such as b12 that may be contributing to not sleeping etc.
Hope this helps
Beverley
ItsCat03 Beverley_01
Posted
As for reading, I read all the time when I was younger, but I read so much that now i cant read more than 5 pages without my mind starting to think about other things I could be doing.
As for a night routine, I have found that listening to ASMR (Autonomous Sensory Meridian Response, basically sounds and visuals that make the body have a certain tingly feeling that relaxes it) when I'm wanting to fall asleep helps tremendously. Ever since I have used this every night for the past year or two.
As for room brightness, if I have a pitch black room with no noise, it keeps me awake for hours on end. there has to be some sort of decently bright light shining into the room, and asmr covers that and the noise part.
I have always drunk drinks like coke and root beer, mainly because I haven't found anything else that keeps me from being thirsty for that long that still has a half decent taste. I don't typically drink it a lot before I go to bed. As much as I like coffee, I don't drink it. maybe a mcdonalds frape here and there, but thats all. And it doesnt make me energetic at all.
As for pets, I have 3 cats. 2 of them would never be in bed with me and the other might here and there, but not really.
The Zyrtec was prescribed by a doctor because of some common spring allergies I had back in 2018.
Thanks for the response!
Beverley_01 ItsCat03
Posted
Hi Again,
Ok, sounds like you have a pretty good idea of what helps you sleep. caffeine can stimulate the mind not just the body, just something to watch for if you feel you are ticking all the boxes other wise?
Hope some of the replies have helped. I have another daughter who cannot sleep without sound either. I may look into the Asmr you mentioned, thankyou.
Beverley
amy59164 ItsCat03
Posted
Hi I'm a nurse just so u know my background. It's important you get your heart and thyroid checked out by a doctor and tell your parents what's going on. An overactive thyroid can cause thirst and increase appetite and weight loss.
The heart is going into arrhythmia either ventricular tachycardia or Atrial tachycardia both which can be diagnosed through ECG tracing of your heart and holter monitor. Again do this urgently. As this is not something you wait on. I would advise u to talk to your parents today and book an appointment explaining your symptoms. or go to emergency. if it happens again. especially your heart racing to 210 it's way to high and not a sustainable rate. I hope this helped you 😊
ItsCat03 amy59164
Posted
I see my therapist tomorrow, so I will let her know. I have talked with my parents multiple times, they don't seem to think its serious. Then again, with the zyrtec incident I couldn't stop shaking extremely violently to the point where i could barely grab a doorknob much less turn it, and my dad didn't think that was serious either so maybe I should be worried.
As for a doctor, my only chance at that is my grandmother, who is the only one who sees these things seriously. But she would have to convince my dad.
Thanks for the replies!
amy59164 ItsCat03
Posted
I. sorry to hear your parents are not taking u seriously.Try cut out all caffeine and limit sugar especially before bed and screen time all effect sleep and heart rate.Monitor your activities and heart rate when exercising and resting. See if there is any improvement. I will be praying for u as well and your parents attitude. 😊