I'm Angry They Haven't Given Me Oxygen Yet. Still Having Seizures From Lack Of Oxygen.

[trappedat20]

Because of the creatine my seizures are less frequent but today I had two. They are very scary and I always feel really sick after them. Nobody seems to be taking this serious though and I'm very angry about this. My next pulmonologist appointment is June 16th and I'm so scared that I'll pass his pulmonary function test and then he won't give me oxygen. I passed the stupid 6 minute slow pace because it's just a 6 minute slow pace. I told them to take me up some stairs but they refused. They don't take notice unless your oxygen goes under 88 also and mines not going to do that from a little pace back and forth in a hallway.

When I look up hypoxia it says severe symptoms include: seizures, not breathing, coma, and brain death. I have it so bad that I have seizures and have stopped breathing. Especially with the way my body likes to progress that means the other 2 could very well happen. I feel like I'm dying when it happens and turn blue and get extremely sick and start seizing. I also sometimes stop breathing. I'm not sure how it works but doesn't that mean that I could also go into a coma or something like that? My oxygen frequently drops from a normal 98/99 to 82-84 when I feel sick but I've caught it as low as 77 before. I've never caught it when I'm seizing but can you imagine how low those numbers must be?

I feel like this is a serious situation and nobody is taking it serious enough. I'm sooo scared that that pulmonary function test will be okay. I'll probably start crying if it is. I don't know how much longer I can go without supplemental oxygen. My husband is coming with me to explain to the pulmonolgist my seizures. Is there any way that even if my tests come back normal we can convince them to prescribe me oxygen? Please help me figure out what to say.

Also, will a nasal canulla help even if my baseline oxygen is a normal 98/99 but I have frequent low drops whenever I do activities or will an oxygen mask help better? I think I would really like a nasal canulla because I would love it if I never had the oxygen drop in the first place but I feel like it wouldn't work in my situation.

I just really don't know what to do. The doctors are running all of these stupid tests and bouncing me between specialists but meanwhile I'm still really sick and nobody's dealing with it when I think it could very well turn into a serious situation. Am I being dramatic? I just really feel like not getting enough oxygen that you turn blue and have seizures could very easily turn into something bad. How do I know that I'm not slowly damaging my body with this either?

Please give me advice on how I can talk to my pulmonologist to get supplemental oxygen. I really need it. Thankyou.

[Katybug]

Are the "specialists" you're seeing experts in seizure activity? Just because someone is a specialist it doesn't mean they are familiar with every disease or syndrome that falls under that part of the body. For example, there are neurologists that handle basic neurology issues like carpal tunnel syndrome, pinched nerves, etc. And they may have a basic understanding of seizures. But then there are neurologists who have a particular interest in seizure disorders and have become experts in that field. Have you seen a neurologist or a pulmonologist who has special knowledge, interest, and expertise in seizure disorders?

My second thought is whether or not supplemental oxygen will fix the problem. I have no idea if it will or won't. If it were me, I would be looking for someone to find the root cause of why the oxygen levels are suddenly dropping. For example, if you stop breathing before the oxygen levels drop, then the oxygen drops and you seize, there would potentially be a different reason for that than if your oxygen drops first causing a seizure and a failure to breathe. I unfortunately can't shed light on what may actually be wrong, but it sounds like determining the root cause is going to determine if supplemental oxygen will help. If your body is somehow not able to use the oxygen properly that a different issue from not getting enough.

On the subject of all the specialists, I know it is a stressor in many ways, but the body of medical knowledge is so vast that not every doctor can know everything. Seeing as many specialists as you can, especially when you have a rare disorder, is often the best and quickest way to find the right answers because 10 or 20 people's knowledge and resources is much greater and more powerful than 5-6. I know it's overwhelmingly at times (I went through over 30 docs trying to find answers), but you have to be your own best advocate and that means leaving no stone unturned in the way of doctors and research you can do on your own. If the docs you are seeing aren't seizures specialists ask them to refer you to one. If they can't, get on the internet and find one....google, forums, etc.

I really hope you are able to find answers and proper treatment quickly. Hugs.

[DeGenesis]

1) Do you have a neurologist? A neurologist deals with seizures and epilepsy, as you probably already know. I assume a neurologist referred you to the pulmonologist because he thought your low oxygen saturation levels were to blame for your seizures. If the pulmonologist disagrees that there is a problem with your oxygen saturation levels, he should converse with your neurologist. If he will not, have your neurologist contact the pulmonologist.

2) When my grandfather was in hospital with pneumonia, his respirologist increased his oxygen whenever it fell into the 92-94% range.

3) Are you asthmatic, or do you know of any other reason why your oxygen saturation might be an issue?

4) Next time you have a seizure, go to the ER. Enough is enough.

5) Do you live in the UK?

[DeGenesis]

The longer seizures go untreated, the more likely they are to become a chronic issue. I am not a doctor, but it seems obvious to me that you should be recieving some pharmacotherapy while the cause of your seizures and oxygen saturation issues are sorted out. A benzodiazepine is the preferred short-term therapy since it has a broad-spectrum of action against many different types of seizures.

Do you wheeze or hyperventilate when you have these attacks? Can you describe them in any more detail?

[DeGenesis]

I've been thinking about this more, and I wonder if this is a presentation of anaphylaxis. You have respiratory and nervous system involvement. Do you have any other symptoms of an allergic reaction during these episodes? Have you had a chance to take your blood pressure when you feel an episode coming on, if indeed you can?

[IceLizard]

Hi MakeMeErised,

It does sound like you could use oxygen based on what I read here: http://www.webmd.com/lung/copd/oxygen-treatment-for-chronic-obstructive-pulmonary-disease-copd

It is about COPD, but has guidelines for how low the O2 sats need to be before oxygen is considered.

If your oxygen level stays too low for too long it can become dangerous, like you read. Do you know how long your spells last? Can you instruct the people around you to call for help or drive you to the ER if you do not come around within a minute or so? It is better to be seen by EMTs or doctors when in doubt than to risk damage.

If you do call an ambulance but recover somewhat by the time they get there you can choose whether or not to be transported to the ER.

Also, it should make your doctors take you more seriously if you are treated by EMTs or the ER for low oxygen.

[DeGenesis]

Also, it should make your doctors take you more seriously if you are treated by EMTs or the ER for low oxygen.

This is a great point. I have always been taken more seriously at the ER when brought there by EMS. They are also much more thorough when taking your medical history than the triage nurses, who always seem in a rush.

No EMT will begrudge you for calling an ambulance, especially with your symptoms.

[trappedat20]

@Katybug I've only stopped breathing during seizures twice and it was the two times that I had back to back seizures. Those are the worst ones and the scariest ones because those are the ones I really worry about something bad happening because I go longer without oxygen then when I just have 1 seizure. Besides that I don't stop breathing and the seizures happen first. I always get that horrible lack of oxygen feel everytime I do things, but it doesn't always turn into seizures unless the drop in oxygen is for too long or is too much. Yes, my neurologist seems to know a lot about seizures. He seems a bit more focused on doing more eeg's though which I think is stupid since we already did an eeg and ruled out epilepsy and determined it's from lack of oxygen. Instead of doing anything himself though he just referred me to a pulmonologist. I'm not sure how much the pulmonologist knows about seizures but he seems to know a little bit about dysautonomia. He knows a lot less than he thinks he does though. He thinks dysautonomia is all about the blood pressure and when my blood pressure was okay acted like I didn't have it. My blood pressure use to be unstable but is now stable. My heart rate has crazy reactions to normal things though and I have all of the other symptoms of dysautonomia. He acted like because my blood pressure was okay I didn't have it. Yeah, I know everyone keeps saying that about the specialists. I guess it's just hard to keep doing it and not getting anywhere. You're right about not knowing if it will help. I just feel like we can't keep doing nothing. I feel like this is serious and nobody's looking into it too much or talking about treatment for the lack of oxygen.

@Degenesis Yes, I have a neurologist. No, I don't have wheezing nor do I have any other signs of asthma or anything like that. The pulmonologist didn't think I had anything else either and just wrote down hypoxia and started testing. The first time I knew I had a seizure (I was having seizures before this time but never knew because nobody ever saw so I just knew I felt really sick and lost consciousness assuming I passed out) my husband took me to the ER and they did an MRI and a Catscan and stuff and an EEG but because of the way I have my seizures we knew they were from lack of oxygen and I got to keep the same neurologist when I left the hospital. Nope, I live in the USA. I'm on neurontin for nerve pain and twitching that is also supposively suppose to work for seizures and taking creatine has lessened my seizures from 3-4 times a week to every few weeks now. I'm still getting that drop in oxygen frequently throughout the day when I do things though which means I'm still at risk for seizures. Nobody is giving me anything for the drop in o2. We have not been able to check anything during the seizures. I feel so sick that I don't like to be touched or have things around me because I feel extremely claustrophobic due to the lack of oxygen. My husband normally waits near me for it to end but he knows better than to touch me or put things on me. No, I don't have any of the symptoms of that. I have what are called anoxic seizures. I feel the drop in oxygen where I feel extremely sick from lack of oxygen after doing something that is tasking to my body like going up the stairs (usually that is what it's from but not always) and then my husband says I turn blue, start snorting, go very still and start clutching my hand and I'll have smaller jerks.

@IceLizard Luckily, they usually last a minute although two times I have had back to back seizures without even enough time for me to come back to consciousness and so those are the more dangerous times where I'm out for about 2 minutes. My husband knows CPR as does my brother in law and have been instructed to do CPR if I don't come back soon enough and to call someone. The thing is I've been to the hospital and they never do anything about it. It's so frustrating because I'm okay by the time I get there. I still feel really horrible but I'm back to consciousness, and all of my levels are back up to where they need to be. Yay it said "

• Arterial oxygen saturation is greater than 88% when you are resting but becomes less than or equal to 88% when you are exercising or sleeping." Mine is normal during for the most part but whenever I do anything tasking to my body like go up stairs or sometimes for no reason it likes to drop to the low 80's.

[DeGenesis]

It seems to me then, that you should be admitted to hospital, and then do something tasking so that medical staff can see for themselves what is going on. If you can not get admitted to the hospital for this reason, then you are at the wrong hospital, or need to assert yourself more.

[trappedat20]

I've tried before at the hospital and at testing and nobody ever lets me go upstairs or anything during testing. I have a cardiologist soon though so I'm hoping they'll do a stress test.

[DeGenesis]

I've tried before at the hospital and at testing and nobody ever lets me go upstairs or anything during testing. I have a cardiologist soon though so I'm hoping they'll do a stress test.

Let's you? What's stopping you from getting up and walking up a flight of stairs, or otherwise exerting yourself?

[trappedat20]

They have an IV in my arm and I'm in a hospital gown and not allowed to even get up to pee without having someone help me.

[DeGenesis]

I'm not saying I don't believe you, but something isn't adding up.

Best of luck.

[Becia]

Um... Maybe I'm a horrible patient, but you still have the right to get up and move. And if you're on a monitor, they will see something going on. Call them, then exhert yourself. You gotta advocate for your care, and sometimes showing doing so is risky, but it gets you the care you need.

And believe me, they told me the "you gotta have someone with you" part too, but I finally told them if I need to pee, I don't have 20 minutes to wait for someone to come in and walk me. Put me in a monitor, you will know what I'm doing and when, and when my hr would spike, they knew I was getting up, and would start coming to the door. Sometimes they made it before I crawled into the bathroom, sometimes they didn't, but they did learn to listen to me, and to trust me that I wouldn't put myself at risk... I just had to pee.

[Becia]

Again though, in this last hospital stay, my hr was going to 180 just sitting up, so they were freaked by that, and would come running in in pairs...

[DADofPotsSon]

MakeMeErised,

What you have described is exactly what my son#2 has had to deal with for over 12 years. At this date time it appears that a cocktail of drugs has helped. When he is admitted to a hospital the addition of O2 seems to help in a quick recovery. His cocktail of drugs is toprol XL, Dilantin, Florinef, Midodrine and a high salt diet with lots of fluids. The Dilantin is being used as a class 1b antiarrhythmic, but it also helps to keep the syncope from the low O2/low BP from converting into a Anoxic Seizure. He has also had syncope & nocturnal seizures due to low O2 and Low BP in REM 3 or 4 sleep. His starts usually with a stair climb or just getting up from a chair and walking fast.

DADofPotsSon

[DeGenesis]

You gotta advocate for your care, and sometimes showing doing so is risky, but it gets you the care you need.

Exactly. This is how I got care in the hospital. They wanted to send me home. Before they could detach me from all of the monitoring equipment, I got up and stood still. My heart rate immediately rose above 160 and before I knew it every **** alarm in the building was going off. "Extreme tachy", my monitor said. Note that they can see your vitals also at the nurse's desk. The alarm kept getting louder and eventually everyone came running. And that's the story of how I was admitted to the hospital for a week and given a diagnosis of POTS. Lol.

[DeGenesis]

Hi DadofPotsSon,

It's awesome that as a father you are so involved with the health of your child. It may seem like a no-brainer to you that a father should be involved, but my dad ceased to give a **** about me once he discovered I wasn't going to be an NHL superstar. My mother did the best she could.

[Raisin]

I tend to agree that some docs may not take a reported symptom seriously unless they witness it. I am a BIG FAN of the video tape! Myself, I plan on walking until my ataxia shows itself (takes about 5 mins. Of walking) before my next neurology appt.. This will be a new neurologist. Then, I will yell out..." hey! Check THIS out!" .Lol.

Would your husband be willing to video one of your seizures? I suppose you would need to document your oxygen level at that time though. That might be difficult. I feel for you and I understand the frustration level is high. There must be a way.

[trappedat20]

@Becia what I want more than anything is for someone to take me up some stairs already. Everything else may or may not make me sick depending on how sick I am that day but either way it's usually not enough to merrit notice. If someone would just take me up stairs with monitors they would see though. I unfortunately can't ever get as far as to do that but I really wish I could because then they'd really see how bad things get. I'm hoping the cardiologist can do some kind of stress test like that though hopefully.

@Dadofpotsson Yes, I remember us conversing a lot about this before and you telling me about anoxic seizures and making me feel a lot more normal because until it happened I didn't even know you could have seizures from lack of oxygen. They said that my holter monitor didn't show any arrhythmia's but I also slept most of the day and didn't do anything that made me sick either. His sound very similar to mine every time you describe it. I don't think my blood pressure drops though. My blood pressure use to be crazy but stabilized around January and is now okay. Yeah mine is normally climbing stairs or fast movements but I have gotten them one time just laying down doing nothing which was really strange for me.

@Degenesis My problem isn't really just standing up though. It's one thing to stand up, it's another to unhook myself from iv's and stuff and walk over to the stairs and somehow grab equipment for myself to monitor it all. It's not as simple as standing up and walking around a room for me. I really, really want someone to take me on the stairs already. Nobody will. I'm hoping I can convince the cardiologist to do a stress test that involves stairs or something.

@Raisin We have been trying to do something like that. The neurologist keeps telling us to but every time it happens it's a surprise because my o2 levels always drop low and I always feel really sick doing activities, it's just whether or not it turns into a seizure. I don't know whether or not the lack of oxygen will turn into a seizure until I come out of the seizure and ask my husband if I had one because I spend the whole time my o2 is really low praying I don't have a seizure and making sure I am in a safe place and trying to bring my o2 up but sometimes my 02 is too low for too long and the seizure is inevitable. Sometimes it is in the middle of the night too and it's completely dark and my husband is asleep and I'm coming upstairs from going to the bathroom. That is what happened Sunday. I'm lucky that my husband who sleeps through everything somehow instinctively wakes up when I'm going to have a seizure. The most we can normally do though is make sure I'm in a safe place in enough time. I would really like to witness my seizures for myself. Especially for those times where negative tests make me question if I really am just a nutcase so I can look back at it and say no, something really is wrong.

[Raisin]

Maybe you can set up a semipermanent video cam at the top of the steps? And leave a light on. I am reaching for ideas I know but it would be so helpful it sounds for you to get it documented. It is nice that your hubby instinctively knows. You must have a strong connection! Or lots of angels that wake him up!

[IceLizard]

I think you should ask for a stress test with pulse-oximetry so that doctors can see your problems develop while exercising.

[trappedat20]

@IceLizard Would the cardiologist do that? That sounds like the perfect test for me.

@Raisin haha I wish I could pull that kind of stuff off. My seizures are so rare now (every few weeks is considered rare to me) that I'd have to do something like that for weeks before it even caught one. I don't even have a video camera either. Good ideas though. I know. He's been like that since the beginning. He's like that if I'm having a nightmare or something too. It's crazy. He always knows when something is wrong.

[IceLizard]

My cardiologist had me do a stress test on a stationary bike, but I also had the option of the treadmill. My O2 levels and heart rate were monitored the whole time. They pushed me to my limits, until I got weak and nearly passed out. They wanted to see where my limits were. It turns out that my limits are much lower than a normal person my age, only about 47% of normal. I do know that cardiologists routinely perform these tests on certain patients, but I am not sure about your particular one. It would be a good thing to bring up since your episodes occur when you exert yourself .

[trappedat20]

Oh sounds good. Thank you. I hope they have a stair master. That would be amazing lol.