Happy to see you posting, Whitney. I hope that you will find some relief from all that is happening to you. I will be going to a dysautonomia clinic on Monday. It can really be tough to consider new medications. My rheumatologist just started me on Hydroxychloroquine and wants me to also start Humira. Humira is an easy one to consider, if the VA doesn’t pay for it, I’m not taking it. Humira cost over $6000.00 a month. I guess that sometimes medication choices are decided for non medical reasons. I wish you well.
Hoping you feel better soon. My dysautonomia specialists prescribe alpha-2 adrenergic agonists like Guanfacine or Clonidine as a way to directly counteract the "fight or flight" surges of adrenaline and norepinephrine. They specifically signal the body not to dump so much adrenaline and norepinephrine into circulation. Either of those have worked really well for me and my daughter. These two are also a suitable substitute for Lorazepam, and they treat our anxiety. I adversely reacted to beta blockers, since those still allow the adrenaline and norepinephrine surges but just keep the surges from hitting the specific receptors that speed up the heart. On beta blockers, my surges ended up hitting the other receptors harder and caused way too much vasoconstriction and ischemia or a mild stroke.
Hi Whitney, I'm so sorry you are going though a very hard time. My heart goes out to you, it really is mentally and emotionally hard dealing with all those debilitating symptoms. Praying for you always. Hugs 💜
I found that a small dose of a beta blocker Metoporol XL 12.5 mg is enough to stop those adrenaline surges and it helps slow my heart rate some. I take it with food in the morning then sit for about 2 hours, then I will have a Nuun tablet with water (that is an electrolyte tablet) then I will get up and have 2 or 3 pickles with another glass of water then just salt all of my food the rest of the day and drink water, I also try and eat a low carb diet. All of those things combined have helped me so much I just thought I would share. I still do not get to live my normal life again I have had to except my new normal. My husband had to quit his job and be my full time care taker. Pots is definitely hard but you are not along. I had it pretty severe and still struggle daily but now most days I can at least get up out of bed. We also separate ourselves from anyone because of COVID. It would be so hard on my if I were to get it so I can relate to the mental health as well. You can get through this. I hope you can find things to make life a little easier. I also use a shower chair to shower and I wash my hair in my kitchen sink so I don't have the hot water running down my back. It caused my symptoms to be worse. Just thought I would share what gets me through the day but also that my life is still hard as well I can't work, or drive and my husband is with me full time but I am thankful that I am not were I was 3 years ago. Hope you can find things that will help you feel better physically and mentally. ❤️
Thank you so much for sharing a part of your story! I am finding things that help me get through each day. I find focusing on my mental health helps the most!! Hydration, starting exercising more and focusing on deep breathing every 3 hours is helping.
I wish I could take a betablocker for Tachycardia but my books pressure is too low. I'm have bouts with high BP 221/221... I'm 66 and this just started after I hsd an ablation.
Something that's helping my pots is Doxocicline.. they can't understand why. Until someone says it helps with inflammation... and there's a key with inflammation and pots.
Good night Hyd🤗 How low does your heart rate go when your laying down or relaxing. Mines go to 50’s sometime 40’s doctors say don’t worry but I do 😞 . I know you don’t take any beta blockers I still take metoprolol 25mg morning 12.5 at night. I slowly took myself off lorazepam but I think I need it for my nerves and to sleep. Sleeping all hours day or night and get exhausted tired 🥱. POTS is so confusing 🤔 one minute I feel great the next I feel like I can’t do anything . I’m so inspired by and your explanation of how you feel, you should be a specialist 💪🏾😍 you are my voice ! Thank you. Hope your doing well and have a blessed holiday with you and your family.
I think a fun idea for some videos is to record what you eat in a day, like since you want to eat healthier maybe do a few videos of breakfast-dinner. And if you found a yummy recipe that is of course healthy. 😘😘
I ha w horrible attacks 3 years and pretty sure I have adrenaline surges too. I habe adhesive arachnoidits which causes these issies. Having a hard time getting help
Hi, I just wanted to comment because your video came up on my RUclips suggested videos. I just wanted to tell you I have been in your shoes. 3 years ago next month I started having POTS symptoms and was diagnosed a few months later. I also have had the adrenaline surges. I have came a long way since then
Hi. Just wondered if you've looked into or had any thoughts on high dose B1 for dysautonomia symptoms? I've just started taking 500mg of thiamine a day. Cheers Jon
I’ve started taking it but I’m not sure what the dosage is. I need to remember to take it every single day also, as I am horrible about taking all my vitamins!
@@whitney0524 EOnutrition has some fairly good vids on here about B1 doses ect... It does seem like quite a high dose is needed though to improve dysautonomia problems. I'll just be pleased if it eases up just one of my crappy symptoms. 🙂 All the best. Jon
I am the same way with medication. It was re solidified when my pots specialist gave me fludrocort. I was so excited to try it because other steroids are the only thing that have made me feel normal during the last 4 years.. But fludrocort caused me such bad pain, so I quite after 10 days. Then I tried Mestinon. That was great the first day, when I took 1/4 of the 60mg. My brain fog cleared and I had energy. So the next day I took 1/4 twice. I don't know if it is because I did too much around the house or if it was too much for my body. I was super weak for at least a week after. I do want to try again but I am scared. My body has reacted to medications for the last 4 years. Like they arent being processed properly.
@@whitney0524 I still haven't tried is again 😂. But I am finally out of my 2 month flare... Brain is super foggy today though. I also got a new private practice primary that is running tests that none of my 14 different doctors have. One came back positive and very high. So she wants to do a test for metal toxicity, mold toxicity, and chemical toxicity. Which I was surprised about as she is a regular MD, not a functional MD
Welcome back, 🐣
Happy to see you posting, Whitney. I hope that you will find some relief from all that is happening to you. I will be going to a dysautonomia clinic on Monday. It can really be tough to consider new medications. My rheumatologist just started me on Hydroxychloroquine and wants me to also start Humira. Humira is an easy one to consider, if the VA doesn’t pay for it, I’m not taking it. Humira cost over $6000.00 a month. I guess that sometimes medication choices are decided for non medical reasons. I wish you well.
Hoping you feel better soon. My dysautonomia specialists prescribe alpha-2 adrenergic agonists like Guanfacine or Clonidine as a way to directly counteract the "fight or flight" surges of adrenaline and norepinephrine. They specifically signal the body not to dump so much adrenaline and norepinephrine into circulation. Either of those have worked really well for me and my daughter. These two are also a suitable substitute for Lorazepam, and they treat our anxiety.
I adversely reacted to beta blockers, since those still allow the adrenaline and norepinephrine surges but just keep the surges from hitting the specific receptors that speed up the heart. On beta blockers, my surges ended up hitting the other receptors harder and caused way too much vasoconstriction and ischemia or a mild stroke.
Oh thank you so much for this information. I’ll look into those medications for sure. Thank you also for the well wishes!
Hi Whitney, I'm so sorry you are going though a very hard time. My heart goes out to you, it really is mentally and emotionally hard dealing with all those debilitating symptoms. Praying for you always. Hugs 💜
Hi, Lupita! Thank you so much for your constant support. How have you been doing?
I found that a small dose of a beta blocker Metoporol XL 12.5 mg is enough to stop those adrenaline surges and it helps slow my heart rate some. I take it with food in the morning then sit for about 2 hours, then I will have a Nuun tablet with water (that is an electrolyte tablet) then I will get up and have 2 or 3 pickles with another glass of water then just salt all of my food the rest of the day and drink water, I also try and eat a low carb diet. All of those things combined have helped me so much I just thought I would share. I still do not get to live my normal life again I have had to except my new normal. My husband had to quit his job and be my full time care taker. Pots is definitely hard but you are not along. I had it pretty severe and still struggle daily but now most days I can at least get up out of bed. We also separate ourselves from anyone because of COVID. It would be so hard on my if I were to get it so I can relate to the mental health as well. You can get through this. I hope you can find things to make life a little easier. I also use a shower chair to shower and I wash my hair in my kitchen sink so I don't have the hot water running down my back. It caused my symptoms to be worse. Just thought I would share what gets me through the day but also that my life is still hard as well I can't work, or drive and my husband is with me full time but I am thankful that I am not were I was 3 years ago. Hope you can find things that will help you feel better physically and mentally. ❤️
Thank you so much for sharing a part of your story!
I am finding things that help me get through each day. I find focusing on my mental health helps the most!!
Hydration, starting exercising more and focusing on deep breathing every 3 hours is helping.
I wish I could take a betablocker for Tachycardia but my books pressure is too low. I'm have bouts with high BP 221/221... I'm 66 and this just started after I hsd an ablation.
Something that's helping my pots is Doxocicline.. they can't understand why. Until someone says it helps with inflammation... and there's a key with inflammation and pots.
Good night Hyd🤗
How low does your heart rate go when your laying down or relaxing. Mines go to 50’s sometime 40’s doctors say don’t worry but I do 😞 . I know you don’t take any beta blockers I still take metoprolol 25mg morning 12.5 at night.
I slowly took myself off lorazepam but I think I need it for my nerves and to sleep. Sleeping all hours day or night and get exhausted tired 🥱. POTS is so confusing 🤔 one minute I feel great the next I feel like I can’t do anything .
I’m so inspired by and your explanation of how you feel, you should be a specialist 💪🏾😍 you are my voice ! Thank you. Hope your doing well and have a blessed holiday with you and your family.
I think a fun idea for some videos is to record what you eat in a day, like since you want to eat healthier maybe do a few videos of breakfast-dinner. And if you found a yummy recipe that is of course healthy. 😘😘
*If you have any recipes that are yummy and healthy maybe show how you made them?
That is an interesting idea ! I would have to do it on a day where I have a good appetite and come up with easy healthy things to share.
I ha w horrible attacks 3 years and pretty sure I have adrenaline surges too. I habe adhesive arachnoidits which causes these issies. Having a hard time getting help
Hi, I just wanted to comment because your video came up on my RUclips suggested videos. I just wanted to tell you I have been in your shoes. 3 years ago next month I started having POTS symptoms and was diagnosed a few months later. I also have had the adrenaline surges. I have came a long way since then
Hi! Thank you so much for commenting. I’m glad ur doing better than you were. We have to keep trying and stay positive!
I get that nasty warm feeling then my heart races
Exactly. I’m so sorry U have it as well :( how are you doing today?
@@whitney0524 the lorazepam and beta helps and you
Hi. Just wondered if you've looked into or had any thoughts on high dose B1 for dysautonomia symptoms? I've just started taking 500mg of thiamine a day.
Cheers
Jon
I’ve started taking it but I’m not sure what the dosage is. I need to remember to take it every single day also, as I am horrible about taking all my vitamins!
@@whitney0524 EOnutrition has some fairly good vids on here about B1 doses ect... It does seem like quite a high dose is needed though to improve dysautonomia problems. I'll just be pleased if it eases up just one of my crappy symptoms. 🙂 All the best.
Jon
Thank you for sharing! I’ve heard many things about B1 being linked to dysautonomia and such. I hopes it helps you!!
I am the same way with medication. It was re solidified when my pots specialist gave me fludrocort. I was so excited to try it because other steroids are the only thing that have made me feel normal during the last 4 years.. But fludrocort caused me such bad pain, so I quite after 10 days. Then I tried Mestinon. That was great the first day, when I took 1/4 of the 60mg. My brain fog cleared and I had energy. So the next day I took 1/4 twice. I don't know if it is because I did too much around the house or if it was too much for my body. I was super weak for at least a week after. I do want to try again but I am scared. My body has reacted to medications for the last 4 years. Like they arent being processed properly.
Medications are so trial and error And it’s truly scary. How are you doing now?
@@whitney0524 I still haven't tried is again 😂. But I am finally out of my 2 month flare... Brain is super foggy today though. I also got a new private practice primary that is running tests that none of my 14 different doctors have. One came back positive and very high. So she wants to do a test for metal toxicity, mold toxicity, and chemical toxicity. Which I was surprised about as she is a regular MD, not a functional MD
@@mommabear2544 oh wow!! That’s awesome! I am trying to get into a naturopathic MD currently! Exciting for you. I hope they can really help you.
@@whitney0524 I hope they can help you too! The only downside is, the expense. Other than that, I am happy.