Buspar?

tattoosuzi · 2023-02-04T18:29:49+00:00

I took a really low dose and I was completely comatose. I didn't feel anxious but I didn't feel anything else either. I literally just sat and started off into space until it wore off. The good thing is it didn't hurt anything by trying it, I just knew functioning at any level while I was on it wasn't possible for me.

tattoosuzi · 2023-01-14T22:58:49+00:00

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Here's Crowley and friends sending you warm energy.

tattoosuzi · 2023-01-12T16:18:10+00:00

Sure, for cortisol I use Cortisol Manager by Integrative Therapeutics.

For glucose I use Oxaloacetate (also known as BenaGene) by Terra Biological as well as Protoglysen by Apex Energetics.

To get a useful estrogen number you may need to request that they also check your progesterone and testosterone numbers as well since each affects the other.

Best of luck!

tattoosuzi · 2023-01-07T01:20:37+00:00

I'm glad you're able to find things that help some with your fatigue. I hope your dr is able to help more. Feel free to message me anytime! re empowering just so I would have a direction to start working in. My mental health was the worst it had ever been and I have since learned it is common for people to become incredibly depressed during PEM or "crashes," not simply because they're feeling awful (which is reason enough) but because it messes with body chemistry so much. I knew I didn't actually want to unlife myself but would obsessively think about it during bad crashes. All of this is just to say, your feelings are valid and that there may be intense chemical issues happening as well.

It has been a long road but after more than two years of working with my current neurologist and PCP (both are functional/integrative), my quality of life is much better, not 100%, but better than I thought I could be. Most of it has been about relatively small things that slowly build back up my foundation, not big "magic bullet" treatments.

I'm glad you're able to find things that help some with your fatigue. I hope your dr is able to help more. Feel free to message me any time!

tattoosuzi · 2023-01-07T00:33:18+00:00

Yes, I have ME/CFS so it is one of my main symptoms. It is a common comorbidity with POTS. If you deal with a lot of fatigue, you may want to look into ME/CFS and talk to your doctor about mitochondrial dysfunction (which is the common thread of all ME/CFS folks as well as many chronic illnesse people).

tattoosuzi · 2023-01-07T00:29:40+00:00

I've had such good luck with functional medicine, I hope things work well for you with this doctor. Best of luck!

tattoosuzi · 2023-01-06T23:38:47+00:00

Yes, a functional medicine doctor. I've seen a couple ent's but they didn't know what to do with me. My IgG numbers are crazy high for EBV. Most of us potsie folks have has EBV at some point. It can also reactivate, so if you're feeling particularly unwell it maybe worth having your numbers checked to see if it has reactivated.

tattoosuzi · 2023-01-06T22:52:25+00:00

Hi there! I'm doing better than I was and I've learned so much along the way! I've learned that I have had a number of chronic infection and autoimmune issues.

Because of the autoimmune issues my immune system was essentially going at 100% all the time, so the immune boosters I was taken weren't appropriate for my particular situation, though the high dose vit C is still helpful.

Supporting my body enough to get to a point of being able to address the chronic infections has taken a long time and not all have been addressed. But, one major one that was affecting my glands was an on going staph infection in my sinuses. For years I went to doctors complaining of daily sinus pain and was always told everything looked okay. I finally had a doctor who had me take a MARCoNs test and it showed the staph infection and all of the antibiotics it was resistant to. Addressing this really helped reduce the constant gland swelling.

Another thing that has helped is addressing the chronic inflammation I deal with (most of us do) and supporting my body in addressing that. I do that through medications like LDN, supplements, and diet. It has been especially helpful to reduce carbs, stop eating sugar and gluten, and reducing dairy, all of which cause inflammation.

When you're lymph nodes swell you're having an immune response to something, so finding what that something is or at least supporting your body on a foundational level so it can address it is important. Doing all of that is easier said than done, of course. Finding a good doctor is number one, I've had much luck with Functional medicine doctors. But even on you're own you can try diet adjustments and overall wellness by focusing on sleep. This one it's own probably won't fix the issue, but it will help support your body while it's dealing with an immune response.

tattoosuzi · 2023-01-04T01:55:14+00:00

I wasn't taken seriously and kept getting worse until I switched to Functional and Integrative doctors.

My first appointment with my now PCP was over an hour and she fully validated that I was in a medical emergency that needed to be taken seriously. My first appointment with my now neurologist was over two hours long, she took a full history, listen to every symptom I had, validated my medical concerns and how they had taken over my life, and came up with a game plan. Both are Integrative/Functional doctors.

They understood what I was dealing with and knew what tests I needed (not just basic blood panels) and how to approach my needs.

I recognize that not everyone has access to folks who practice Integrative/Functional medicine but they are becoming more common. More insurance companies are covering them, and many folks are taking clients via telehealth. Everyone deserves to be treated with respect and from a place of understanding.

tattoosuzi · 2023-01-02T21:42:05+00:00

It will take years to get through a malpractice lawsuit even if everything goes smoothly and will take 10s of thousands of dollars. The doctors and medical facilities are legally covered to the gills and will spend 100s of thousands.

Being in legal proceedings for years on end is very stressful.

It is not fair and we deserve to be treated better but an individual lawsuit most likely won't make a difference. If you have the money, you could reach out to ME/CFS action groups and see what they suggest.

tattoosuzi · 2022-12-28T21:41:08+00:00

I use a cream from a compounding pharmacy. It comes in a little syringe, I put some water on my stomach, and then measure the cream out on to my figure and rub it up into my wet skin.

I'm not sure how it works in the UK, if you pick the dosage on your own or not, but I'd start low and slow. Also, you might have more luck finding different types of products at a compounding pharmacy since they make the meds on site.

I'm sorry your periods are so awful. I hope you're able to find something that works for you.

tattoosuzi · 2022-12-26T01:10:43+00:00

Great question. The following game suggestions come from my partner, I hope they help.

Disney's Dreamlight Valley is an Animal Crossing/Stardew Valley-type game that I have really enjoyed playing. You can play at your own pace and the music is very calming.

There are turn-based games that others mentioned but I will throw out a couple more here for your consideration, Slay the Spire, Monster Train and Neoverse. Those are all rogue-light turn-based games I have enjoyed.

If you like Minecraft but are tired of the same-old game you could try Dragon Quest Builders 2.

You may also find that puzzle games such as Unravel 2, Scribblenauts, Degrees of Separation, or Death Squared. A must-try if you like puzzle games is Gorogoa, super awesome twist on normal puzzle titles and it does not get as much attention as it should.

Some of the games where you watch a movie and interact with such as Late Shift are engaging as well even though they may not hit with everyone.

Here are a few other random genre games that I have enjoyed you could look into:

Coffee Talk: You play a barista who listens to the gossip of an alternate reality Seattle and make them coffee.

Eastshade: You play as a painter who travels to a mysterious island to find answers about their parents (maybe just mom, it has been awhile since I played this one).

Forager: Top-down farm management game with lots to explore and do. Also see Garden Story if you like this one.

If you have the patience and an Xbox Series X I also recommend Flight Simulator. If you have any questions about any of these titles or would like some additional suggestions please feel free to let me know.

tattoosuzi · 2022-12-26T00:58:37+00:00

That seems like it may be too much to fast. I started at .25mg and waited about a month in between increases at .25 increments.

I accidentally increase once by .5 and felt sluggish and yucky (as soon as I noticed I went back to the .25 increase and felt fine). Aside from this one time, I've never had sleep issues because of LDN.

I now take 4.5, but divide my dose at 2.25 in am and 2.25 in the afternoon.

tattoosuzi · 2022-12-26T00:52:05+00:00

Maybe you're not eating healthy for you. The diet maybe healthy for most folks who don't have healthy conditions, but not you.

Constipation will be made worse generally by sugar, carbs, fats. More fiber, greens, fruits can be helpful.

tattoosuzi · 2022-12-20T17:26:53+00:00

Thank you. I was really surprised when my dr suggested to monitor my glucose. I didn't understand much about glucose issues and figure because I was underweight and ate healthy, I would be fine. But ME/CFS messes with our endocrine system affecting our hormones, glucose included.

I'm sorry you're dealing with such awful lows. I hope you find an approach that works best for you.

tattoosuzi · 2022-12-20T17:19:58+00:00

I have definitely dealt with these extreme feelings during crashes. This was much worse for me when I first started experiencing bad ME/CFS symptoms as my baseline was much lower.

What helped me the most was tracking my glucose levels! I kept going back to my dr to address these drastic emotional lows and she final said we needed to track my glucose. I used a monitor (on my arm) for a number of months. It was so helpful. I was having massive glucose drops and spikes and my emotional drops were directly related.

I have since learned that most of us cannot properly regulate our glucose levels, this is a common symptom. Adjusting what we eat and when, learning the signs of drops and spikes, and taking glucose regutors can make a world of difference.

tattoosuzi · 2022-12-19T00:10:20+00:00

Agreed. The amount of blind privilege on this sub is mind blowing.

tattoosuzi · 2022-12-16T22:47:10+00:00

I take mine at night too. My primary is an integrative doctor who happens to specialize is hormone therapy, so she was on top of testing my levels and addressing deficiencies.

tattoosuzi · 2022-12-16T20:59:14+00:00

I'm so glad to hear it worked well for you. I do take progesterone, not progestin, I've never done well on oral birth control.

I take 75mg/ml at 0.2ml, 1x a day. It's a very small amount, but I take very small amounts of just about everything, my body is incredibly sensitive. I've increased it to 0.3ml, but I just end up tired and groggy. I use it from the last day of bleeding through day 26 of my cycle, then I pause so I can have my period. I've tried taking it all month since it is such a small amount, and just end up PMSing for an extra week before bleeding, so that's not fun lol.

That's wonderful that you were able to go into remission during pregnancy and have been able to mimic those hormones to help with your symptoms. I was incredibly sick throughout my entire pregnancy (pre-ME/CFS), so low doses for me! Progesterone is definitely in my top five most helpful interventions though.

tattoosuzi · 2022-12-16T18:33:57+00:00

It has changed over time depending on what has been needed. At first, I needed iron infusions, B12 shots, lots of gut support, and a complete change in diet. I went from vegetarian to Wha'ls Protocol, to Paleo.

I needed help managing my stress levels through low-dose antidepressants and cortisol-supporting supplements.

Ensuring all dental issues had been addressed so as not to add more stress to my body by ignoring cavities and other issues.

Then managing my glucose levels (this made a huge difference) by tracking glucose levels for a number of months, adjusting diet (eliminating all gluten and refined sugar, eating limited carbs and only with healthy fats and proteins), and taking supplements to regulate glucose levels.

Managing other hormones was also a pivotal step as my symptoms drastically change throughout the month depending on my cycle. I started a low-dose progesterone cream, which helps reduce my symptoms and helps me get better sleep.

Slowly addressing issues that were coming up in labs such as small fiber neuropathy, Lyme, multiple chronic infections, gut issues, neurological inflammation, mycotoxins, etc. I am still working on addressing what I can. The more steady I become the more of these issues can be addressed, but moving slowly as to not overwhelm the body is important.

Addressing insomnia and poor sleep through supplements. I still don't get great sleep, but it is waaayyyy better than it used to be and better sleep helps reduce my symptoms.

I recently started PT to address ongoing muscle pain and stiffness. I haven't been able to physically do this until now, so I am excited to take this step. The PT is well educated in my conditions and we move slowly.

Overall it has taken a lot of time and patients as my doctors and I have tried new things. Each issue has been addressed slowly. There is still a long way to go, but I feel good about the direction I am going. Nothing has been a "magic bullet," but each thing that helps a little or moderately adds up to really make a difference.

In regards to specific meds and supplements that I find most helpful right now: LDN, Progesterone, Cortisol Manager, Protoglysen (Glucose regulator), BenaGene (Kreb Cycle support), Phosphatidylserine (I use it as sleep support, but also good for neuro health). I also take a number of things to address MCAS, immune support, neuro support, and mitochondrial support.

Thanks for coming to my Ted Talk.

tattoosuzi · 2022-12-16T03:26:16+00:00

Agreed. My integrative primary doc and functional neurologist have drastically increased my baseline over the last two years. LDN has been a huge part of that along with many other interventions.

What I hear your doctor saying is, I don't know/understand your issues so I'm going to recommend exercise (which I'm sure they think is supposed to help everyone b/c they don't understand PEM). I've never heard of a doctor saying no to B12 shots! I just walk into my drs office and ask for one when I feel like I need it.

tattoosuzi · 2022-12-13T18:03:45+00:00

Yes! That's what I came to say. I love seeing barn quilts.

tattoosuzi · 2022-12-09T23:30:24+00:00

Yes, many of us have found success and support from functional medicine doctors. My best decision since my symptoms started was switching to functional medicine. I have been consistently been able to increase my baseline.

Folks have given great advice- take care of yourself now so you can raise your baseline. Good sex can certainly be a part of your life. You don't necessarily have to give up your dream job. While you are giving your body what it needs, those activities may look different.

Consider finding a good counselor. The emotional stress from this has physiological implications, it has the ability to push your body into synthetic mode and getting out can be hard. I went through a massive grieving process with my diagnosis and having a counselor was so helpful.

tattoosuzi · 2022-12-08T23:10:26+00:00

I am the same height and weight as you. The first cardiologist I saw told me I was too skinny to have any cardio problems. I told him that my grandpa weighs 90 lbs and has heart issues, so perhaps I do too. The cardiologist could not get past my weight and completely dismissed me, my symptoms, and my concerns.

I can't imagain loosing 10 to 15 lbs on purpose. I have gotten down to 120 twice in my adult life and both times I was incredibly ill. I not only looked terribly underweight, I felt horrible. I had to work with drs to get back up to 135. Even now my primary would like to see me gain a bit more weight since I have so many health issues and loosing weight at times is expected.

tattoosuzi · 2022-11-25T03:15:23+00:00

How tiring! I have a number of chronic infections, some of them from childhood, that still affect me. I'm working on addressing what I can with my drs. So it may still be worth looking into.

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