Anxiety adrenaline waves every AM waking me from sleep.

I had a scan (mri) of the abdomen back on 4/26, and I have to have another one of the pelvis, which takes 30 minutes. Since I didn’t hear anything as far as findings are concerned with regard to the first scan, I have to presume that this tumor is not on either of my adrenals, or anywhere else in my abdomen, or that, possibly , the gadolinium contrast just failed to demonstrate, and that would mean I might have to have a more sensitive test, like an MIBG scan. My BP is great, but these “Pheo” spells occur randomly, and they cause these “feelings of doom”, where I can wake up suddenly and experience a sense of doom. These bother me worse than the BP issues, so I have to get to the bottom of this, because it is seriously affecting my quality of life. Thank you for reaching out to me, I appreciate it.

Are you sure you were on 2-4 mg of clonazepam (Klonopin)? That is a huge dose! The usual starting dose for clonazepam is 0.25 mg. twice a day.
Clonazepam is in a drug category called “benzodiazepines,” which includes Valium, Ativan, Xanax and many others. These drugs can be very helpful in the treatment of anxiety. Anxious people, IMHO, tend to be “control freaks” which is not necessarily a bad thing. Yes, benzodiazepines can be mildly addictive, but from what I’ve observed, anxious people find the dose that works for them (usually a low dose) and stay on that dose that helps them. Oddly, from a chemical standpoint, anxious people don’t seem to reach tolerance on benzos. Tolerance is where a person takes a given dose, but in a short time, the drug is no longer effective and the dosage must be increased in order to get the same effect. Tolerance develops quickly with narcotics (=opiates).
An anxious person might need to be on a “their” dose of a benzo for years. If it is a reasonable and effective dose, I don’t see that as a problem.
With the help of a psychiatrist, find the dose that completely relieves the anxiety. Stay on that dose for 3-4 months (or forever if you like). Then start to taper slowly w/ the help of your psychiatrist. With say, Ativan, an anti-anxiety dose might be 1 mg three times a day. Once you’ve taken that for 3-4 months, begin a slow taper (about 0.25 mg a month) until you reach the dose at which the anxiety recurs. Increase the dose by 0.25 mg. That is “your” dose and you can stay on it indefinitely. A great deal of paranoia has developed about benzodiazepines. It is true that IN COMBINATION with other drugs, respiratory depression can occur. Even death might occur but chances are that it is caused by an opiate that was prescribed with a benzo.
On their own, benzos are among the safest of drugs. It is extremely hard to overdose on them and most cause virtually no side effects.
If you have had cancer (or some other major traumatic event) and believe that you are anxious about a recurrence, find a dr. that will work with you on this. During crises, you may find yourself needing to go back up a milligram or two, but when the crisis abates, taper (w/ a dr.) yourself back down to the minimal dose that works for you.
Gabapentin and Lyrica are drugs that can also be used for some types of anxiety.
But some of the substitutions for benzos that I’ve seen cause more trouble than they are worth—far more trouble than sticking with a low dose benzo might.
Some have been prescribing atypical anti-psychotics for anxiety and sleep. These drugs can help, but they can also cause EPS (extrapyramidal symptoms) which are disconcerting muscle movements that can be treated with Cogentin quickly and easily. Less pleasant side effects are tardive dyskinesia, which are involuntary muscle movements—like tapping a finger, twisting a hand, facial grimaces and tongue protrusion. Akathisia, which is involuntary foot tapping, may also occur. These can be helped somewhat with propranolol. Tardive dyskinesia is permanent though. I think few patients are told about the risks of using these drugs for any length of time, even as they are being excessively cautioned about benzos.
If you are anxious and/or depressed, individual psychotherapy can help. Group therapy and support can also be very helpful especially if you are taking the appropriate medication.

Huge update. After a year of suffering, my gynecologist suggested that I do some vaginal estrogen, as well as regular estradiol on the skin with progesterone, and that the surges were Actually, hot flashes at night. Within four days all of my symptoms completely stopped and disappeared. Now I just need to get off the Clonopin at night. For you perimenopausal and menopausal women out there the podcast called Perimenopause WTF? helped me figure this out with this gynecologist. It is invaluable. Good luck, everyone.

katiedid
I’m wondering if you had surgery and how you’re doing.

Hi, I don’t know if I will ever have surgery at this point in time. I’m seriously considering finding a competent endocrinologist, because the cardiologist whose care I was under was an abysmal failure; he gave me a script a while back for an MRI of the abdomen, but I wanted imaging of the pelvis, because I was led to believe after the Endocrinologist doctors came to my hospital room back in October 2021 that they were pretty sure I had a Pheochromocytoma (paraganglioma) in the pelvic region, but also said it could be on the adrenal gland. So the cardiologist gave me a script for the pelvis also. Despite high hopes, neither of those MRI scans demonstrated any sign of a “pheo”. I saw my cardiologist on 7/11, and he said, “you had the tests and it didn’t show anything, so you don’t have a pheo”. I told him that I believed I still have one, and because I had the triad of symptoms, that is a strong predictor that there is one, than not. The dearth of my medical history, and the fact that a doctor at my local hospital back in February told me that my father’s sudden death back in 1988 was probably due to a pheochromocytoma induced stroke or heart attack is enough proof for me to believe that I have one, and that it’s genetically linked. I know for a fact that MRIs and even CAT scans have failed to demonstrate these tumors, and if they do, then clinicians oftentimes end up sending their patients for a nuclear scan like an MIBG 123, and it’s usually successful. I don’t believe I will stay with my new cardiologist, because he is more interested in getting me on Eliquis, because I had to be taken to the hospital on 7/3 due to a sudden unprovoked a-fib episode, and because I develop RVR when I go into a-fib, they alway recommend transport; EMT put an IV in, and then administered a bolus of Cardizem in an effort to bring that ventricular (167) rate down. I was in the ER for 3 hours before I cardioverted on my own, which I usually do. If I didn’t I would just get the “paddles”, not a big deal. These pheos can cause all kinds of rythym abnormalities. In fact, back in 2019 (October), I was transported by ambulance, and the paramedics (they have more training than EMTs) did a 12 lead EKG, and they said my rythym was going from SVT to a-fib, then a-flutter, than ventricular tach. They said they had never seen anything like it, and that’s because pheos are not on anybody’s radar, because they’re rare. I hope they find this thing before it kills me.

I’m so sorry to hear you have had no resolution of this very serious problem.
I don’t know if you remember my situation, but some of our symptoms are similar. I have not found any answers either.

I did have another CT scan of my adrenal gland where an adenoma had been found nine years ago.
It is now smaller than it was years ago, so doctors still don’t believe it is causing my anxiety, and sleep disruptions. I don’t know.

I have more cortisol testing coming up. My doctors seem to think getting cortisol levels down will alleviate some symptoms.

Good luck to you.

You said you had a cat scan nine years ago which demonstrated an adenoma; did your primary refer you or did you go see a specialist on your own? Because, it has always been my experience that my primary would recognize that I had a medical issue, and thus would make arrangements with a specialist, and they (specialist) would see me quicker than if I made the appointment myself. One time I said to my then primary, “how did you get me an appointment with that specialist so soon?” He simply replied, “it’s called professional courtesy.” I’m about to fire the cardiologist that I just began seeing. I have had three visits at his office, and each visit has caused me stress and made me depressed. When a physician makes anyone feel that bad, they need to “go.” At the second visit he brought me to tears, I should never have gone for the third visit. On 7/11 he said, “ your scans didn’t show anything, so you don’t have a pheochromocytoma.” I told him that I believed otherwise, and that, just because an mri fails to show it, doesn’t mean it’s not there. I’ve read journal articles in PubMed that clearly state MIBG123 is reserved for those patients who’ve had other imaging studies (cat scans/mris) that failed to locate these pheos. This cardiologist is in a group with other cardiologists, and their boss is Robert Wood Johnson Hospital. I intend to reach out to them on Monday, because they need to be aware that they have in their employ a doctor who causes patients harm, physical or mental, neither one is good for the patient.

The adenoma was discovered accidentally during a CT scan to check out my pancreas. My mother died from pancreatic cancer and I’d had some suspicious symptoms. My pancreas appeared fine but I was concerned at the mention of the adrenal adenoma. No doctor has ever been concerned about that. Whenever I mention it, it is dismissed, as has happened with this last CT scan.

I know I seem like an hypochondriac now, but until the last couple years (after having Covid) I rarely went to the doctor.
I have had good and bad experience with many, many doctors in the last two years. Like you, some have brought me to tears, and I never return.

Yes, a referral definitely gets you in to see a specialist faster. But
I find now that even with a referral it’s up to me to make contact and set up the appointment. In years past the doctor’s nurse would handle that appointment while you were still in the office. Now, most everything is left to the patient. I have my husband’s help or I would have given up this fight a long time ago.

I hope you get the help you need.